Nathan's PKD

No Throat Cancer

2011-07-03T17:04:00.003-05:00

OK - so I had my follow-up appointment with the ENT about two weeks ago. I've just been busy and did not post any updates to the blog (sorry about that).

As you may have guessed, the doctor saw no signs of cancer in the biopsy of the neoplasm that was removed from my larynx. This is great news!! Also, my nasal sinus cavity was healing nicely, and he told me to come back in a month (which is about two weeks from now). I'll be seeing my nephrologist, my dentist, and my ENT all around the end of July (yippie for insurance co-pays).

In "blogger" news, I added a "share this" button for each post. I don't know how many of you do the social media thing, but if you do, feel free to do so here (I don't know if that even makes sense, but to those who will use it, I'm sure it will).

OK - no more long sentences. I'm off to hang out with my little baby (and my wife). See you next time.

Sinus and Larynx Surgeries: The Next Day

2011-06-14T19:43:00.002-05:00

Well, for those of you who read my last few posts, I would like to say: I have survived my surgery. We arrived at the hospital at 8:00 am. The nurse at the admittance desk told me that my surgery would be at 11:30. Too bad no one called me the night before to let me know that. Then, we could have gotten up at a reasonable time. Oh well. They took me back to the pre-operative area about 11:15. I did not go back to surgery until almost 12:45. The surgery was done by about 2:00, and I was out of recovery by 3:00.

I'm none the worse for the wear, I suppose. My nose is a little bloody, and my throat is pretty sore. Based on how it feels, my nose should be better in a few days, and I'm hoping my throat will start feeling better by Thursday. The bleeding in my nose should clear up with saline and time. Hopefully, I won't have to worry about my sinuses for a while (since they got cleared out).

I go back to see the doctor next Tuesday, the 21st. He should be able to tell me how the sinus clearing went, and he should give me the results of the biopsy from the neoplasm on my vocal fold. He said that it did not look malignant, but they would not know for sure until they run a biopsy. I should know more next week.

I'm glad that the surgery was pretty easy. I haven't had to take too much medication for pain management, yet. I went ahead and had a full day back at work today, if that lets you know how I am feeling.

I'll post my biopsy results once I find out what they know. See you next time!

Sunday, June 12, 2011

2011-06-12T07:50:00.003-05:00

It is one day before my surgery. Tomorrow I get to go in and have some procedures done. Here is what my doctor's orders say:

I have been informed of the risks, possible alternative methods of treatment, and possible consequences involved in the treatment by means of:

Functional endoscopic sinus surgery
Laryngoscopy with biopsy

under the general anesthesia for the relief of:

Chronic sinusitis
Neoplasm Larynx

That's just the fancy way to say that they found a growth on one of my vocal folds (observed through visual means) and that my CT revealed that my sinus cavities were full of junk (thanks to the CT scan). The doctor will be removing the growth from the vocal fold, and he will have it sent off for biopsy to make sure it is benign. He will also go in and vacuum out (or flush out) my sinus cavities and give me a fighting chance against my allergies (at least for a little while).

As of this morning, I do not have a time for my surgery, yet. They hospital is supposed to call me this evening and give me instructions. We will drop off Hannah with Jenny's mom, and then we will head to the hospital to be bored for a while, then surgery, then back home (yippie).

My only real questions for the doctor will be to ask him if he recommends any antibiotics to fight off lingering infection (now that the growth will be gone). I'm also going to try to ask about post-operative care (what to do and not to do) and if I will need any pain medication. The surgery itself sounds pretty simple, so that should not be an issue.

The last time this doctor operated on me, for my deviated nasal septum, I remember more of the overall day than any other previous surgery. It was interesting to have to get on the surgical table myself, and then to be awake for almost the whole hour of "post-operative observation". (And yes, grammar nerds, I have chosen to go with the more British use of the period outside of the quotation marks. I believe that everyone in America will start doing this, eventually.)

So, that's all that I have for today. If you remember me tomorrow, I could use your prayers. I would ask that the doctor would do his job well, and that my recovery would be quick and easy. See you all next time!

ENT Visit (Forever-Cough)

2011-05-19T05:32:00.002-05:00

OK. Here's the story so far. I had some allergy-related coughing and sneezing back at the end of March. At my nephrologist appointment, the doctor prescribed me a Z-Pak (this was early April). I took that for five days, but it did not really help. Then, I called them a few weeks later, and they prescribed me some Avelox (for ten days). That helped, some, but I still did not stop coughing. So, I called the kidney doctor a third time, and they advised that I go and visit my ENT.

I saw the ENT on Wednesday morning. He took a look down my throat, and he saw that I have a growth on my vocal folds (also called vocal cords). He said that it is probably benign, but that it is causing my vocal cords to not be able to fully come together, which allows air to aspirate and can be a big problem with my cough and allergies. He wants me to come back in the middle of June for surgery to have the growth removed.

This Friday (tomorrow), I will have a CT done on my head to check my sinus cavities. The doctor thinks that I probably have a lot of blockage up there, again. If I do, he wants to go and flush them out, again, like we did back in 2008.

So, I am going to have a head CT on Friday, and then I will check with the doctor next week to find out what they see. I'll let you guys know what I find out later. I'm guessing that I will have to have my sinus cavity washed out again.

So, the doctor said it is probably a benign growth. I have a head CT on Friday. I will have surgery in the middle of June.

Enjoy your weeks!

Nephrologist Update: April 7, 2011

2011-05-08T06:52:00.002-05:00

OK - so I'm back again, this weekend, trying to catch up on my blog posting. As you can see, I'm still posting one month in arrears. (I admit, I phrased that last sentence just to use the word "arrears").

I went to see my nephrologist back on April 7 for my normal quarterly appointment. They confirmed that my work-up from January all looked fine. For those who do not remember, I had my annual Glofil appointment back in January. The doctor was concerned that the test results were much lower than they should have been. They had me turn in a 24-hour urine collection just to double-check the results. As it turns out, I am in the upper 70's (I don't recall the exact number). This is a little lower than the 80.2 that I got last year. They did not seem concerned about the lower number. Being in the 70's is probably still pretty good for a post-transplant patient. And, we will see how well I do next January.

Unfortunately, the clinic was having their computer system updated the week that I was there. That means, they were not able to get me my blood work results for that session. I have been feeling pretty good, so I am not concerned about not having results.

My only negative this appointment was a persistent cough. I started coughing about a week before my appointment. The doctor gave me a Z-Pack. I took it for five days, but it didn't seem to do much for me.

If we fast-forward to the present, I am still coughing (May 8). I called the doctor again this week, and I got a 10-day prescription for Avelox. I am also scheduled to see an ENT on May 18. I'm hooping that he will have some kind of suggestion to help. That, or maybe the Avelox will be working by then and I won't need anything. We shall see!

That's all for this week. If I do my job right, then I should post again after the May 18 appointment. That will get me completely up to date. And, I should be better by then (if everything works right).

See you later!

Cardiologist Update: April 5, 2011

2011-05-01T06:22:00.003-05:00

I had my most recent cardiology appointment back on April 5, 2011. I last saw the doctor about six months ago. I will help you catch up, in case you have forgotten (or not been reading).

I have a mitral valve prolapse. I have been followed by a cardiologist since I moved to the Dallas area back in 2001. The doctor has been following me every six months for a while. When she retired, I got a new doctor. He looked at my echocardiogram and had me come in after three months. But, based on those two scans, he had me come back in six months. There had been a fear that my heart was getting worse, but it turns out, it was not a problem.

So, we are now caught up to April 5. I had my twice a year echocardiogram. The doctor took a look, and he was very pleased. My last three scans all looked exactly the same (the two three months apart and the one in April). So, he was very pleased. He decided that I do not have to be back for another year.

So, it seems that all is well, in terms of my mitral valve prolapse. I have not gotten any worse in the past year, and the cardiologist does not want to see me for another year. It has been my experience, so far, that the doctor NOT wanting to see me is a good thing.

So, you should not hear another heart update from me for at least a year. That will be great! As long as there are not any future problems, then I won't have to go back to see him. I did go and see my nephrologist on April 7. My next post will be about that.

See you next time!

Kidney-versary #4 (And Other News)

2011-01-15T06:33:00.003-06:00

Guess what? I remembered that I have a blog! I'm sure you're all very excited. I look forward to my hit counter jumping by at least one point this week. I'm sorry that it's been a while since I have blogged, but I think my time has been concentrated elsewhere for the last year :)

Post-Transplant Lab: October 07, 2010

As you can see, I plan to break up this post into sections. At least then, you can scroll around a little and read what you feel is important (to you). I saw the doctor for my normal four-time-a-year appointment back in October. The last useful information I probably posted was about my cardiologist, but here we are back to nephrology. The doctors ran all of their standard tests. They came back with a 1.1 in creatinine (which was the same as it was on July 8, 2010). They do not worry about a creatinine until it is higher than 1.1. My BUN went up from 10.0 to 12.0 (the normal range is 7.0 - 21.0).

The other lab numbers looked pretty consistent. I'm happy to say that the regimen that I am on (diet, exercise, medication, and doctor care) have kept me in about the same place since my transplant. They also had me do a 24-hour urine collection before the appointment, and those results all looked pretty normal. All in all, the doctors said that I was in great health, and that I should come back in three months.

On a side note, I asked about chicken pox. At the time, Hannah was nearly one year old, and she was scheduled to have a live chicken pox vaccine between 12 and 18 months. The doctor said to avoid all bodily fluids from her for (I think) one week (maybe two weeks) after she has the vaccine. I'll ask Jenny, as she will remember how many weeks it is. It will be sad, once she has the vaccine, that I have to basically avoid her. (Babies are constantly producing bodily fluids of some kind).

Glofil Appointment and Labs from January 13, 2011

This brings me to the present. Hannah has not had her chicken pox vaccine, yet. I have not had to avoid her. Oh, and it's been kind of cold here in Texas. Also, I rode in a car for a total of four days with Jenny's family to go and see her relatives in Arizona. It was a good trip, and I think I did a good job of staying hydrated (except when we were in the car).

As the title of this section implies, I had my annual Glofil appointment on the 13th of January. If you are new to the blog, click on Glofil appointment for my short explanation of the test. The short answer is: you are in a lab for four hour, drinking water, collecting urine, and having blood drawn to measure kidney function.

I've always thought that this was the most accurate test that they can do for your kidney function. But, it seems that even this test can have errors. My Glofil results have been in the low to mid 80's since my transplant. My understanding is that a perfectly healthy person would have a score of 100 (perfect). When you are pre-transplant, they cannot put you on the transplant list until your Glofil is less than 20. Once you are less than 10, then they recommend starting dialysis. My score came up as a 71! This sounds bad, to me, but the doctors were not worried.

They ran the standard labs on me, as well. My creatinine was down to 1.0 (from 1.1 last time). My BUN was consistent at 12. I have an HDL (cholesterol) of 43.0 mg/dL (range is 21 to 74). My LDL is 69.0 mg/dL (range is 44 to 136). My cholesterol is 122.0 mg/dL (range is 0 to 201). My triglycerides were 120.0 mg/dL (range is 0 to 201).

The doctor seemed to think that the lower Glofil score was not consistent with the rest of my blood work from that day. She said that it may be something else was going on, or the test results were slightly off, or something happened (who knows?). So, she suggested that I do another 24-hour urine collection this weekend and return the results on Monday. That way, they can test the creatinine passed in the urine over the course of an entire day and see how that compares to my blood work and to the Glofil test. As long as the 24-hour collection and the blood work match up, then they will not worry about the odd Glofil score.

They also did my yearly bone density test at this appointment. They've updated their testing criteria and are not longer worried about the radioactive part of the Glofil test. The unofficial word is that my spine's number was slightly down, and my hip's number was about the same. I am still at the very edge of the osteopenia range (almost normal). She advised working out using weights or resistance to help push me up into the normal range. She also said that the spine fluctuates more than the hip, so the difference there was not unexpected.

I think that is about it for me for today. I have to do my collection and turn that in on Monday. I won't hear anything back from the doctors unless there is a problem. So, have a great day, and this is me, signing off for now.

See you all next time (when I hopefully remember to blog sooner after an appointment)!

2010 Top Kidney Disease Blog Award

2010-11-19T07:43:00.002-06:00

It appears that I have "won" an award from certifiednursingassistant.org. I'm not quite sure what it all means, yet.

The email that I received states:
As a website dedicated to help those consider a career as a certified nursing assistant, we only provide the best information available. Whether it's a resource that helps patients cope with their illness, or provides ways to live healthier, we feel that it's necessary for those seeking to obtain this information. This is why we've featured your blog, as it is one of the best to teach our readers.

I realize that not very many people will really find this interesting. I like to see that people (or groups) have been reading my blog and actually found it helpful or at least useful to someone.

I'd like to publicly thank the readers from that website for their award. I hope that they are able to find the information that they are seeking from a patient's perspective.

In other news, I realize that I never posted about my October transplant appointment. I'll have to fix that (but not today).

See you next time!

September 15, 2010: Cardiologist Appointment

2010-10-10T06:54:00.005-05:00

Hi there, faithful readers (or those of you that just happened to stumble onto this posting). Today is the updated that my normal readers were hoping to see last Sunday. Unfortunately, my free time in the morning was cut an hour short, so I was not able to get online and write up my explanation from my latest cardiology appointment.

I saw my "new" cardiologist about a month ago. I say new because the cardiologist that I used to go see has retired from practice. I think she wanted to spend more time with her family (of which I am in favor). So, the previous visit to my cardiologist, back in June was to check my heart and my mitral valve to make sure everything was still working correctly. You can read that post here: Cardiologist Appointment - June 15, 2010. The doctor thought he saw some disturbing signs, so he asked me to come back in three months, instead of my typical six, to have my heart reviewed again.

The post received a few questions, which I will endeavor to answer below. I did not know the answers myself, so I just asked the doctor to help me out :)

1) Please Explain Ejection Fraction

The ejection fraction is the volume difference between heartbeats. Normally, you would expect to see an ejection fraction of 60% to 65%. My current rating is between 55% and 60%. I asked, and the doctor said that an ejection fraction of less than 50% was very bad, and that they would want to get me into surgery if that were to happen.

2) What is the Thickness of Your Mitral Valve Leaflets?

Normal mitral valve leaflets (shown in the diagram at the bottom as MV) are usually around 5 millimeters thick. My leaflets are slightly thicker than normal, but nothing to worry about at this time.

3) Do you have any enlarged ventricles or atrium?

No, at this time my ventricles and atria are both normal sized. This question is important because the mitral regurgitation can cause the heart to expand in size, over time. If you heart starts to get larger, it cannot be made smaller again. So, part of what they watch for is to make sure that your heart is not getting too big and that your ejection fraction stays within safe tolerances.

4) Please explain regurgitation and prolapse (in regards to the heart).

Regurgitation is blood flowing the wrong way in the heart. In the diagram at the bottom of this post, you can see a rough drawing of the heart. Blood is supposed to flow from the Left Atrium (LA) to the Left Ventricle (LV) and then out of the Aorta (AO). Regurgitation is the arrow that shows blood flowing back across the Mitral Valve (MV) from the LV to the LA.

Prolapse is simply the valve action going back up into the Left Atrium (LA). Normally, your mitral valve (MV) should allow blood flow downward (in the drawing) from LA to LV. The valve leaflets should stop the blood from flowing back up. Mine do not do that quite as well as they should. This reverse action causes the leaflets to be a little spongy, and to eventually wear out.

The doctor is watching the size of my heart as well as the ejection fraction that the valve is allowing. When they start to head toward a more dangerous range, then we will start talking about surgery.

5) What's your current status, then?

OK - big question! I'm still doing fine. The doctor said that he did not see a recurrence of the problems that he thought he noted in June, so I will not see him again for six months (this was my normal schedule). I'm not in perfect heart health, as my Ejection Fraction is down to 55-60% instead of 60-65%. But, until there are any changes, then I will keep my ribcage intact!

Thanks for reading today! The drawing below is my sketch based on the sketch that the doctor gave me at my appointment. Please try an pretend that it looks like a heart.

My next post should be about the post-transplant follow-up that I had on October 7. If I'm lucky, I will write it up next Sunday. See you later!

July 8: Post-Transplant Appointment

2010-09-26T06:46:00.002-05:00

I last posted to my blog back in July. It is now almost the end of September. The easiest thing to draw from this is that I am a busy person and do not place a top priority on my blog. The thing you may not think, immediately, is that being healthy does not make for as good of posts (in my opinion).

But, as I was at the doctor the last time I posted, I figured I might as well post about that particular appointment today (while I have a few minutes). My last visit to the nephrologist, for my post-transplant follow-up, was a great visit. My creatinine is at 1.0, which is good to see. My other numbers are all still good as well. I am always glad to see good lab reports as a part of my quarterly visits.

If I remember correctly, I was a bit sick the last time I visited the doctor. I had some sort of sinus infection, which led me to have a chest x-ray. The doctor did not see any signs of problems in my lungs, which was good. I got some antibiotics from my family doctor, and they seemed to clear up the infection fairly well.

The biggest problem with being sick, as a post-transplant patient, is that it takes a long time to get better. Even with medication, I was still coughing for weeks. It means that I have to be more careful when I get sick and make sure I talk to the doctors quickly.

In other news, since my Medicare ran out at the beginning of the year, I have been paying full price for my post-transplant medications. For prednisone, this is not really a big deal. For the Myfortic and Prograf, it is quite expensive. I contacted the two pharmaceutical companies that make those medications, knowing that they offer financial assistance. I received forms from both companies, and sent in the receipts for my medications. I got back a payment of $80 for three months of Prograf. I have not seen anything from Myfortic.

So, I think that posting on Sunday morning works well. I have finished my Bible study for the morning, but am still waiting on Hannah to wake up. If I remember, I'll even update again next week about my 3-month cardiology appointment (and answer some reader questions).

Stay tuned!

Cardiologist Appointment - June 15, 2010

2010-07-09T07:23:00.000-05:00

Today is Thursday, July 08, 2010, and I am sitting at the Nephrologist's office with my company laptop and MS Word as my only friend. I realized that I have not blogged in WAY to long, and that it is time for me to update everyone on what has been going on. Today's post will concern my cardiology appointment from almost a month ago. I'll try to get another post later this week (or early next week) so that I don't have too much information in one post.

I saw my cardiologist back in June for my biannual (two times per year, not every two years) appointment with echocardiogram. They have been watching my mitral valve to make sure that everything is still working properly and that I am not getting worse.

Note: I said "they" because I recently changed cardiologists. The doctor that I had been seeing has "retired" to spend more time with her children. I'm all for this, as a principle, but was not overly excited to lose one of my favorite doctors. So, if she reads today’s blog, then she'll know I liked her. My new cardiologist is at the same practice, and was recommended by the previous one, so I'm not too worried about him. He's just new, and I will have to get used to him.

Now, I will get back to the appointment details. I had my echocardiogram, and it seemed about the same to me as all the others that I have received. However, when the doctor came to tell me the results, he had some bad news. It appears that my ejection fraction (I think) has gone from 60 to 70% down to about 55% (based on visual observation). This is not the best direction for that to go.

The doctor told me that he was slightly more concerned, based on the previous echocardiograms that had been taken. He said that he would like to see me every three months instead of every six months. He said that I still have a "moderately severe" mitral valve prolapse, but with the reduced flow through the valve, he'd like to see more often.

At some point in the future, I will need to have my valve replaced. It's not that time, yet, but the doctor wants to be careful and make sure that I do not suddenly have a major problem because of my mitral valve. So, he is going to watch me a bit more closely. I guess I will just have to wait and see.

Overall, it was a good appointment. The whole reason I was going in to have the echocardiogram every six months was to watch my mitral valve and make sure it was not getting worse. Since it has gotten a little worse, they now want to check me more often. Luckily, the echocardiogram showed what it needed to show, and they are now going to check me more often.

One day, I will need heart surgery to have my mitral valve replaced. I'm not sure what that will involve, but I'm sure it won't be pleasant. On the plus side, I've never had open heart surgery, so that will be new. It's always fun to have something to add to my "List of Surgeries."

That's it for today's post. I will have two more blog posts coming up soon, so stay tuned. Thanks for coming by to read.

Posting on Another Blog? What?

2010-03-15T05:25:00.005-05:00

Good morning, everyone! It's 5:26 AM (CDT) here in Texas, and I'm writing a blog post.

"Why are you doing that?", you may be asking yourself? I'm glad you asked. A few weeks ago, the author of the distinguished blog http://parentingbydummies.blogspot.com/ sent me an e-mail asking if I would be willing to put up a guest post on her blog talking about what it is like to be a blogger, a parent, and a kidney disease patient. I think I may have failed her on two out of the three, but at least I know what the third thing (kidney disease patient) is!

"That's great, but it doesn't really tell me anything," you may be saying at this point. You're correct. I'm typing up this blog post early in the morning because my guest post should be appearing today on her blog, and I wanted to one billion readers that all came over here to visit to have something personal to read.

Please note: One billion is an approximation. I did a rough estimate that one in four people that see a link in a blog they like will follow it. I am also guessing that the aforementioned http://parentingbydummies.blogspot.com/ has four billion daily readers. My guess may be off by one or two (I didn't count heads or look at her blog stats).

I know the real reason you came by today. You were hoping that I found the pictures of my kidney that I scanned all those years ago. You are in luck! I found them, and will link to the photos, here. I didn't want to scare anyone off, so you actually have to click to see anything gross/awesome.

http://picasaweb.google.com/nmccart/NathanSKidney?feat=directlink

If you are still here, congratulations! If you had to clean vomit off of your keyboard, I am sorry. I vomited for about a month prior to having that removed (ugh).

Anyway, thank you all for coming by today. I just wanted to say that I am VERY thankful to God for all that he has done for me. I am alive today, which is wonderful. I have a beautiful wife and a wonderful (hopefully) daughter. I have a great church family, and a faith that helps me stay strong.

Enjoy the blog, and post comments anywhere you wish!

Please note: I plan to go back and edit this post later today once I get the direct link to my guest post on http://parentingbydummies.blogspot.com/

READ THE GUEST POST HERE:

http://parentingbydummies.blogspot.com/2010/03/make-new-ifriends-monday-polycystic.html

Three Years Post-Transplant

2010-01-16T15:11:00.002-06:00

Thanks for stopping by, everyone! This week is my three year kidney-versary! I received my donor kidney on January 11, 2007. It's been a wonderful three years.

I had my annual Glofil appointment on Tuesday of this week. For those of you that do not follow me on Twitter or are not friends with me on Facebook, I had a great appointment! I scored an 80.2 on the Glofil this year, which is the same as what I got last year. Now, for a normal person with two kidneys, that would be an 80% kidney function. For a post-transplant kidney patient with only one functioning kidney, it's a really good score (according to the doctors). I'm glad that my kidney is still working well and that my body is still not showing any signs of rejection. Keep praying that it will stay that way for MANY years to come.

My creatinine was 1.0 again. This is really good, since it was 1.4 when I made a short visit to the Emergency Room a week or so ago. For some reason, I passed out and got to go to the ER. I was perfectly fine. The doctors said that it was probably dehydration. My guess is that it was due to being at home for three weeks with our new baby and not being on my normal water drinking schedule. My vacation ended at the end of December, so I'm back to work and back to drinking enough water on a daily basis.

I also had my annual bone density scan at the appointment. Although I did not see the doctor after having the scan, I did as the technician for an unofficial reading of the charts. She said that it looked like the bone density of my hip was the same as last year and the bone density of my spine had improved, slightly.

I did get some bad news in December. My cardiologist, whom I really like, is retiring to spend more time with her family. I told her that it would be fine, as long as she would continue to see me. Even though I am very sad, it's good for her. Her and her husband have several young children, and I hope that they enjoy this extra time that she will have with them. She recommended a new doctor at their practice (who started out as an army doctor) to take over my cardiologist. I will see him in about six months and let you know ...

That's about it for now. I'm wonderfully healthy, and it looks like my wife is enjoying her new role as a mother. Our baby is happy and healthy (as far as we can tell) and is gaining weight. We are going to have our pediatrician watch her and see if she develops any kidney problems. Hopefully, even if she does, it will be a VERY long time away.

Thanks for all the prayers. I hope everyone enjoyed the post. I'll see if I can put up stuff about my health more often (though, it is difficult from time to time being busy).

oops

2009-11-24T15:38:00.002-06:00

You know, I totally forgot to follow up on my nine-day illness. I did get better.

After reading some comments on my previous post, I realized that I did not tell my reading community about the resolution of my problem.

It turns out that I got better soon after I last visited the doctor. I was sick for a grand total of nine days, and eventually got better. It was strange to be sick for so long after not being ill at all for the past two years. I'm glad that I am feeling better and that the doctors were there to take care of me.

Hopefully, I will not be sick again for at least two more years. I am doubtful of that, especially considering a new family addition that should take place in a few weeks.

My next task at the doctor's office will be to ask how infant immunizations affect an immuno-suppressed person (such as myself). I know that some of the vaccinations are live virus, and I need to know if it will be a problem.

I probably won't find out about that stuff until January. I'll post again (later) if I learn more. Have a great one!!

Follow-Up from Friday's Appointment

2009-10-10T09:28:00.003-05:00

I went to the doctor again on Friday. They said that the CMV test results were negative. At least that is a positive thing.

They ran a sonogram on my transplanted kidney while I was there to see if there were any problems. The sonogram came up good, with nice blood flow running through the kidney. They said it looked like I was getting more fluid, which is a good thing.

My creatinine was still at 1.7 on Friday. The doctor's original call was to have me go to the hospital and be monitored over the weekend. But, given that I promised to take care of myself, they said I could go home, drink LOTS of clear fluids (soups, Gatorade, salty stuff, etc) and take Imodium if needed.

I took some Imodium at noon, but did not need any more yesterday. I actually ate some semi-substantial food for supper last night, which is a good thing. And, all the food stayed down (also good).

I woke up this morning feeling well again (which is nice). I ate some Cheerios and a banana for breakfast. Now, I just have to see how the rest of the weekend goes.

I have another appointment on Monday to see the nephrologists. Maybe they will be able to give me some good news. I hope I am still feeling better!

Thanks for all the prayers - talk to you again soon.

(251) Nathan Gets Tested for CMV

2009-10-07T15:08:00.002-05:00

Hello everyone! I'm writing today to let everyone in on what has been going on with me for the past week, and what they think is happening.

The title is sort-of a spoiler. The week has ended with me being tested for CMV. You can read all about this on the Internet, if you like. It sounds like it is a standard virus that more than 50% of adults contract in their life time. It's really not harmful, unless you have a suppressed immune system (like I do). They did the test today, and I should find out an answer on Friday.

Okay, now to rewind. I woke up late last Wednesday night (early Thursday morning) feeling nauseated. My stomach was sour and I kept having diarrhea through the night. I did not go to work on Thursday, and had a couple of vomiting spells. I cut back, and only took my transplant medications on Friday, and did not vomit any. I stayed home from work that day, too. I felt bad on Saturday and was slightly better on Sunday. I went to church Sunday and it was not terrible. I needed to rest during the day, which was good. I went in to work on Monday, but did not feel great. The diarrhea was gone on Sunday but back on Monday.

Tuesday morning (yesterday) I was sick again. I was throwing up and the diarrhea was back in full force. I stayed home Tuesday (and today). I went to the transplant doctor's office Wednesday (today) to see if they had any suggestions. They told me that I was dehydrated and had lost ten pounds. Those two items helped contribute me to having a creatinine of 1.7 (which is bad).

The doctor gave me one liter of saline and sent me to have a CMV test done at the nearby hospital. I guess they don't have the equipment to do that at the transplant office. And, it was a good way to cost me $2 for parking. I go back to the office on Friday to get my results from the CMV test (and see if they found anything).

So, in summary, I've been sick for seven days now. It's not fun, and I'm not enjoying it. I don't know what to do to get better, and the doctors don't have much information to give me, yet. I'd appreciate any prayers.

I'll give more updates when I learn more (probably after Friday's appointment).

Thanks!

Follow-Up From Appointments

2009-07-25T14:31:00.002-05:00

I went in for my cardiologist's appointment and ran on the treadmill. I walked/ran for a little more than ten minutes to get my heart rate up over 161. The technician put me on the table and then looked at my heart and the pulmonary vein. She mentioned, during my test, that I was doing really well and that she did not expect to see anything wrong with my heart. The doctor, after reading the test results, told me that my heard and pulmonary vein were working just like they are supposed to be. This is great news! Based on what the doctor told me last time, it's likely that I am just noticing more how my heart and breathing are rather than they are getting worse.

So, there is nothing (else) wrong with my heart. I've still got mitral valve prolapse. My heart still has a moderate to severe prolapse. One day, I will probably need to have a valve replaced, if my heart continues to work the way that it does. But, there are no problems coming my way any time soon.

I also had a nephrology appointment this week. This was my regular quarterly appointment. The doctor was very pleased with the results of my 24-hour urine collection. She said that I had my best results on that test since my transplant. My labs were also great. My cholesterol looked wonderful (HDL was 43.0 and LDL was 69.0). This is great news, saying that my medication is still at the right levels. My creatinine stayed at 1.0 (great news) and they were glad to see me again.

I will be going back in about three months. I'm glad my kidney continues to function just as well. Stay tuned for more news as it comes up. I had a fever last week of 100 (for just a morning). I felt hot, but it was much better by lunch.

My cystoscopy results were great. The urologist called back while Jenny and I were getting her 20-week ultrasound. They said that my urine did not have any signs of cancer. So, that's more good news. I guess the problem that I had had with my urine a couple of weeks ago was all related to my natural polycystic kidney.

Thanks for reading. I'm glad to continue doing well with the transplant.

And remember, you can always follow me on Twitter for updates (other than the blog).

Cystoscopy and Fan Question

2009-07-16T05:33:00.002-05:00

As a qiuck follow-up, I am feeling much better. It has been almost a week since my cystoscopy, and I think I am doing fine. I am back to using the bathroom a normal number of times per day (which is nice). There is little to no pain associated with it, and that's nice, too. I haven't had to take much Tylenol or anything else, so I'm appreciative. I also have not heard back from the urologist, so I am guessing there was nothing wrong with the urine sample that they sent off to the lab.

In other news, I received the following question via Facebook, from an R.K. the other day:

Yes... Sadly I was diagnosed on Monday. Go back in on Wednesday to go over the test results. I have 12 cysts and 6 stones. Went in for back pain. I just happened to be good friend with a urologist and went to see him over my general doctor. Did a full ct scan after the sonogram showed several stones. Says my kidney function is however at 100%. did they do an MRA on you to see if you had an aneurysm? That will be next. I went to B & N to find a cookbook, but the only ones are either vegetarian or diebetes. What does your diet consist of now? I also have had hypertensive blood pressure for years and sleep 15 hours a day. I'm now on lisinipril however, I'm still so exhausted from nothing. How is your body handling the transplant?

I had asked her about her PKD diagnosis, and she gave me that reply. As a response, I told her:

That's never good news. Being diagnosed with a life-long illness can be a big shock.

I was diagnosed when I was in college. I had pain in my lower back that turned out to be a kidney stone. They did a sonogram to make sure the stone was small enough to pass, and they discovered Polycystic Kidneys hiding inside. This was a huge shock to me since no one in my family had ever heard of it.

Do you have a family history of PKD? I was told that it is a dominant genetic disease, and that it is a guarantee that one of your parents has it if you do. They were not sure if my mom or dad was the carrier, but both my sister and I (only two siblings) have been diagnosed.

I don't remember if I had an MRA done. I've had many, many different scans done on my kidneys. They have all shown the same thing. I have a bunch of cysts, and the last time they measured, my right kidney was over 20 cm long.

As far as diet goes, the most important thing to do is to cut down on sodium and caffeine. The biggest danger for kidney disease patients is high blood pressure. So, if you can keep that under control, you are in good shape. As your kidney function declines (and you move through Stage 1, 2, 3, 4, and 5) your diet changes. They recommend less proteins like red meats as they are harder on the kidneys to process.

Your worse diet will be on dialysis. There are SO many things to watch out for it's crazy. But, don't worry about that unless you end up there (hopefully not).

And, after transplant, I'm up to eating anything I want. I have to watch out for fatty foods, since I'm on a steroid, and it's very easy to gain weight. I also still watch my blood pressure (just a smart idea for anyone).

I would suggest finding a good cardiologist and a good nephrologist (in addition to your urologist). The cardiologist can closely monitor your blood pressure and watch out for things like heart problems or cholesterol issues that may develop with your kidney disease. The nephrologist is a kidney expert that can give you your best advice about your kidneys, and get you on regular checks to monitor your progress. It's also important to make sure your doctors are aware of you kidney problems so that they don't prescribe many medications that are cleared through the kidneys (better for the kidneys long term).

Not being a doctor (only ever a patient) I would recommend a Glofil (pronounced "glow feel") test soon. That test gives a very accurate kidney function level. This way, you can have a base reading while you are still young and are at full functionality. Your nephrologist would be able to schedule that. It's about 3 hours long and mainly involves drinking lots of water and tracking a radioactive dye as it passes from your body.

If you're sleeping fifteen hours a day, I'd recommend getting checked for anemia. I had that, for a while, and it really sapped my energy. They have medications to help, but if they find it, I'd suggest iron supplements and more spinach.

Please let me know if you want to ask anything else. I'll be glad to give you any and all information as I have experienced it.

I did ask her for permission before posting her message and my response. She said that it was fine. I just wanted everyone to know that I am still answering questions, and that I still hope my advice or experiences are useful to others.

I also got a new comment on an older post where someone named Heidi enjoyed my explanation of the Glofil test. I'm glad to help!

I'll see you again next week to tell you about my echo stress test. See you later!

After the Cystoscopy

2009-07-13T18:34:00.004-05:00

I went to the urologist on Friday afternoon. He wanted to do a cystoscopy to make sure that everything was okay with my bladder. A cystoscopy involves having a camera placed inside the urethra and into the bladder. The doctor looks around in the bladder and checks for any problems.

So, they start by giving you some lidocaine gel (a local pain deadener) into the end of the urethra. They waited a few minutes for the numbing to take full effect. Then, they ran the camera, which is on a long tube, up and into the bladder. It was mildly uncomfortable. In fact, I think that passing kidney stones is much worse. The camera and tube are flexible, and there is saline hooked up to the device, so that the doctor can fill the bladder to get a better look.

The doctor looked around for a few minutes and he did not see any problems. He said that he would send off my urine to a special lab to check for any cancer cells. That was his biggest concern. I have a higher likelihood of developing cancer because of the immunosuppressant medications.

It turns out that everything is okay (as far as they can tell). I don't have any problems, and did not have any more blood in my urine or any particulate. And, the doctors didn't really see any other problems (nor have I had any calls from the nephrologist about issues).

The only down-side has been after the test. Having a camera shoved up inside of you is not really so natural. There has been a little bleeding since the procedure (and it was pretty painful the first 24 hours or so). The blood is all gone now, and most of the pain is gone. The pain has lasted a little longer than I would have preferred. And, I noticed today that I was having to go to the bathroom much more often than I did Saturday or Sunday. I imagine that my bladder is still mad at having something inside it rooting around.

That's about it for today. Thanks to everyone that prayed (I know that helped with my anxiety). And, there may be a post later in the week with a conversation I've been having with someone. If not, you can look forward to my Stress Echo Cardiogram which I am having on Friday.

Enjoy your week. Remember, you can follow me on Twitter if you want a more real-time idea of what I do.

Cystoscopy - Coming Soon?

2009-07-10T05:18:00.002-05:00

This afternoon, I have to go and see my urologist. I was sent to him with a diagnosis of hematuria (and particulate in the urine). The suggested procedure is to have a cystoscopy to make sure that there is not a kidney stone (or something) in my bladder.

I have to admit to my blog reading community that I am not looking forward to today. This is not a procedure that has me excited in the least. I'm having a difficult time resolving my fear and handing it over to God. I know that I do not need to worry and that He cares for me. It's just tough, sometimes. Part of it might be some type of male cultural problem (who knows?).

I thought I'd compose the rest of my blog as a prayer, written after the format that Jesus gave the disciples when they asked Him how they should pray. As a reader, you get to enjoy a glimpse into my personal relationship with God, and see a bit of my fears handed over. It will sound slightly formal, but that is mostly because I have the time to type it all out (not just praying in my mind, or out loud). Here it goes:

My Father in Heaven,

You are wonderful and awesome. You knit me together in my mother's womb, and You have laid out the plans for my life. I love that You know me so intimately and have that You know all things. I pray today that my life can be a pointer to You and Your kingdom. Today I come to you with fear in my heart. I have a cystoscopy potentially scheduled for this afternoon, and I am not looking forward to it. My hope is that I do not need the procedure at all. I know that You have provided us with doctors to help when we are sick and that I need to trust my doctors in this matter. I just ask that Yyou would take away my fears and worries, and allow me to rest in Your comfort. Thank you for loving me despite my sins. I know that You continue to forgive me even though I continue to fail You. Please help me to follow Your Word more closely in my life. Help me not to allow fear and worry to creep into my heart as I face things I do not understand. Thank you for your Son, Jesus, who died for my sins.

Amen

So, I will go to see my urologist at 2:10 pm this afternoon. I haven't seen him since January of last year when Jenny and I were trying to figure out why she wasn't getting pregnant. It will be nice to give him the good news that she is due in December.

It might be a few days before I post again. I suppose my Facebook Friends or Twitter Followers will probably hear about my appointment before my blog readers do. Enjoy your days, and know that I will be great (and that I am still feeling wonderful).

(246) Monday Misadventures and a Pending Cystoscopy

2009-07-07T05:59:00.004-05:00

So, I probably should have tried and blog about this yesterday, but I didn't take the time to do it. I wanted to let everyone know, for starters, that I am still okay and as of yet, nothing has been deemed wrong with me.

Sunday morning, I noticed some blood in my urine and some particulate as well. The particulate was small pieces that seemed fleshy. This was a bit disconcerting, but there was no pain associated with it. I had a lot of water to drink that morning (since church was starting at 10:50 instead of 9:15 that day). Going to the bathroom two more times, I still saw particulate, but the color was less red each time.

When we got home from church, I went to the bathroom again, and saw that the color seemed normal and that there was no particulate. I called the 24-hour doctor's line at the nephrologist's office, and they paged the on call physician. We talked and he said that if there was no pain that I could just go in to the clinic on Monday to be checked.

Monday, I saw the doctors. They ran blood work and everything was normal. My creatinine was at 1.0 (good) and the other results were normal as well. They also ran a sonogram on both of my kidneys (the native and the transplanted). The sonogram showed nothing abnormal on either kidney. The doctors suggested that I should have a cystoscopy done by my urologist.

I called the urologist and set up an appointment for Friday. I'm not sure if he will do the procedure in his office that day or if he will evaluate me and then set up a date for the cystoscopy. My understanding is that it can be performed in the office, depending on the "type" of test they do. The point of the cystoscopy will be to see if there is a kidney stone in my bladder. Those interested can read more here: http://en.wikipedia.org/wiki/Cystoscopy.

Please pray that the test, if needed, goes well and that this was only a burst cyst in my native kidney (or something else that was non-problematic). I'm not worried, but I would prefer if there was nothing wrong (especially with the transplanted kidney).

Thanks for reading and praying! See you next time.

Cardiologist Appointment - June 18

2009-06-30T17:24:00.002-05:00

I went and saw my cardiologist on Thursday, June 18, 2009. I realize that it has been almost two weeks now since I went to see her, but that's not my fault. We have been very busy here at home and I have not had the opportunity to make a good blog post.

That's not to say that this blog post will be either informative or humorous, but at least it will exist.

All that being said, my appointment was to have a 2D echo cardiogram done on my heart. This apparently went well, according to the doctor. She said that my results are the same as they were last year, and that she would probably not need to see me for another echo for twelve months. This is always good news (yippie!).

I told her that I had been experiencing some shortness of breath when I walk up stairs. This is not a problem when I walk for a half hour on the treadmill. Even when I am carrying small weights, I still do not have trouble breathing. I only notice the breathing being harder if I am walking up the stairs, or working out in the yard (bending and standing a lot). She told me that it might not be a problem and that I may just be noticing this more since I am exercising and paying more attention to my heart and lungs.

That being said, she told me that she wanted to run some tests. I asked if that meant she would try to kill me, and she chuckled. She asked if I had ever done a stress test before, and I indicated that being the reason I had asked about murder. She laughed again, and told me that we should go ahead and make sure my heart functions correctly when it is actually having to do something (not just when I am laying down on the exam table).

So, on July 10 (which will be my fifth wedding anniversary), I will head back to the cardiologist's office with running shoes and a pair of shorts. There's no way I'm doing this test in smooth soled shoes and khaki pants. That's just crazy. For those of you that don't know, the doctor is going to have me walk on a treadmill that gradually increases in speed and angle of ascent. In layman's terms, they want me to start walking lazily on a park path and work my way up to attempting to run up a large hill. Once I get to the point of nearly passing out, they start a five-minute timer and see how well your heart does.

As far as I can tell from the one time I did this for my transplant testing, if you live to hear the timer beep, then your heart functions correctly. Last time, I obviously passed, and I expect to pass again. I may ask to see if they can start my incline a bit higher so it doesn't take nearly fourteen minutes to complete! That's about how long I was on the treadmill the last time. But, of course, as a man I can do it. (Here, you can imagine me with my chest stuck out, facial hair gleaming, and muscles bulging inside my shirt).

That's about it, healthwise. You will notice that I updated the links on the right-hand side of my page (for those of you using my style sheet and visiting on line). I changed the link from our now-defunct adoption blog to our new hot "family" blog. It's called 'Journey Through Parenthood' and can be reached at http://journeythroughparenthood.blogspot.com/. I think that's the longest name Jenny could get (sorry about that). Update your RSS readers, bookmarks, or that little scrap of paper next to your monitor (yes, I know you have one).

Nothing eles from me at this time. If you just can't get enough of Nathan, you can always follow me on Twitter. If you are not familiar with Twitter, just imagine what awesome would smell like, mix in some Internet, and add a dash of real-time updates. Oh yeah!

See you next time (probably after July 10).

Not About Kidneys: But Still Important

2009-06-17T20:26:00.004-05:00

Hi, it's Nathan. I know that it has been a while, but not too many exciting things have been happening (medically speaking) to me. However, I do have a major announcement. Now, normally, this blog will NOT contain information that does not pertain to my health. But, for today, we are going to deviate.

Jenny and I are pregnant, and will be having a baby in mid-December (2009)!

Below is the story that is posted on our other blog. This blog was originally going to be about our adoption process, since the doctors told me that my chances were very close to zero for ever fathering a child naturally (ha, showed them!). Though we are not stopping our pursuit of adoption, it will be on hold (per the agency) until after the birth of our child. The following paragraphs were written by Jenny:

When Nathan and I decided to pursue adoption we did so because the doctors told us we had a VERY small chance of becoming pregnant naturally. They recommended procedures that involved lots of doctor manipulation. We did not have peace about going down that road so we chose adoption. However we saw no point in going back on birth control. We said if I ever got pregnant it would be because God wanted it to happen. We are excited to announce that God decided that a pregnancy IS in His plan for us! I am 14 weeks pregnant, due December 16. Everything looks great so far, the sonogram showed a good strong heart beat. I also had a first trimester screening for Downs Syndrome and Trisomy 18 and all those results came back normal.

After finding out I was pregnant one of the first things we talked about was how we felt this affected our adoption process. Nathan and I both feel that God has still placed a desire in our hearts to be adoptive parents. We believe that God is in control of timing and don’t even feel a need to put ourselves on hold or anything. We realize this means we have the possibility of having 2 babies very close together. =) We know God will work our all those details though. I’m going to call our agency this week and let them know what’s going on. Once the baby is born we plan to create an additional page to add to our scrapbook.

Here are some things you can pray for:

Healthy pregnancy
Healthy baby
God’s perfect timing on our adoption
Continue to pray for our birth mother

Since this blog will no longer be solely focused on adoption I think I’m going to change the blog’s web address. So be on the look out in the next few days for a post giving the new address. You will want to make sure you update all your bookmarks to the new address once it is in place. We are still on an adoption journey, and this pregnancy is now a part of that journey.

Thanks for taking a few minutes to read something non-kidney (at least so far) related. If you would like to follow developments on this story, you can always visit http://nmccart-adoption.blogspot.com/ for details. Please note that this link will soon change, but I will be sure to update it in the side bar (to your right and my left, as I am behind your screen looking at you).

This is truly a miracle, and we continue to trust God for his best in our lives. As you all (may or may not) remember, my Polycystic Kidney Disease is most likely the autosomal dominant type. This means that there is a 50% chance of the gene being passed on to any of my children. Given that both my sister and I have PKD, it is probably not the autosoal recessive version (the more deadly at a young age). We will have to see, as time goes on, what we decide about testing and kidney disease and things of that nature.

For now, we appreciate any and all prayers. I will be blogging later this week on my cardiologist appointment this Thursday.

See you soon!

Post-Transplant Clinic: April 2, 2009

2009-04-06T12:01:00.001-05:00

I had another quarterly post-transplant appointment with the Dallas Transplant Institute in lovely downtown Dallas, TX. Once again, it seems that I am doing well.

Here are my results (of note):

Creatinine is at 1.0 (same as last time) -- this is still GREAT
BUN is at 12.0 (up from 11.0 last time) -- this is GREAT
Triglycerides were at 253.0 (which is bad, but I also had donuts for breakfast)
Cholesterol was at 141.0 (which is actually low, oddly, compared to my triglycerides)

The doctor asked me why I had eaten donuts before coming in for blood work. I told them that if they want me to do fasting labs that I will NOT be scheduling them at 10:30 am (meaning get blood drawn between 10:30 and 11:00). As it turns out, they want to do an accurate check, so I'm supposed to have a fasting lab done next time, and I scheduled my next appointment for 7:40 am.

They also told me that I need to have a sonogram done of my "native" kidney. Your native kidneys are the ones with which you are born. In my case, since I had my left one surgically removed, I have only one native kidney left, and it is on the right side. The doctor reminded me to tell the technician that so that they don't spend thirty minutes looking for a kidney on the left that isn't there.

Additionally, I have not done a 24-hour urine test in over a year. So, they gave me a few buckets to fill up. I'll probably do that some Saturday here in the near future and drive those buckets down to the transplant clinic early on a Monday morning. I figure that as long as I get the 24-hour urine test back to the doctors WAY before my next appointment, they can tell me if there are any problems when I see them (or call if there are SUPER problems).

Neither of the procedures listed above are any problem to do. The sonogram is in the office and will just be at my next appointment time. The 24-hour urine collection is done at home. The only negative part of that is keeping a SEALED container of urine in your refrigerator all weekend. Granted, that's not a problem for us as we have no children or any guests staying with us, but I have that it can be an issue in other households.

All is well with me. My weight continues to fluctuate around 185 lbs. My height stays steady at 6-feet and 2-inches. So, I'm not really overweight, though I feel that way some times. I think my residual self-image has me still being around 170 lbs (which is small). I doubt I would ever be that, no matter how much I exercise or diet.

Speaking of which, I am working on my exercise. I try to walk on my treadmill at least once a week. I try to take the stairs at work (to the third floor) every day. And, with diet, I just eat what Jenny feeds me, so there's not much worry there.

Thanks for reading. I know that I don't update all that often, but whenever I received e-mailed questions, I try to answer them right away. See you all next time (around the end of July).

2009 Glofil Test and 2nd Kidneyversary

2009-01-10T09:20:00.000-06:00

Greetings everyone!

I'm here to report on more great news. I had my 2009 Glofil test on Thursday, January 8, 2009. As far as I know, the results should be good (since they did not call to talk to me that afternoon). The test went very well. I had to drink seven glasses of water to start, and then only 4 glasses over the next three tests (one, then two, then one). The test was nice and easy. I made sure that I drank plenty of water for a few days before that. It really helps you with the test if you are well-hydrated.

I also saw the nephrologist while I was at the office. They were glad that I have been feeling well and did not have any changes for me. My creatinine was at 1.0 (which is wonderful). All of my other lab report numbers looked great. As always, my magnesium was a bit low. My sodium and chloride were also a bit low, but that's not a problem. The cardiologist had said that my triglycerides were a bit high and that I needed to watch them. According to the lab report from the transplant clinic, my triglycerides were at 201.0 mg/dL. The standard range is 32.0 to 238.0.

Sunday, January 11, 2009, will mark my second kidney-versary. I have been feeling great. Since my surgery on my nasal septum, I have not been ill. I have been feeling great and am loving my transplanted kidney. I am appreciative every day for the family that made the difficult choice to donate the organs of a loved one. I am thankful that they made that choice that has changed my life for the better.

In other news, it appears that there are people (in the world) that have found my blog interesting (and possibly slightly helpful). I received an e-mail this week from a guy named Micha. It appears that his wife has recently discovered that she, too, has polycystic kidney disease. It sounds like they are young and that she is not near kidney failure at this time (which is good). I'm glad to hear that my posts may have been encouraging to them. They are living in Zambia for a few years. If you would like to read their blog, it is at http://mccoy.wordpress.com/

Finally, I have also received a comment on the post "Many Tests Later" regarding my nasal septum surgery. The commenter asked about how my post-surgery recovery was and what was to be expected. I left another comment to hopefully help the commenter know that I have been doing well and was glad to have the surgery.

Thanks to all the readers that are out there. I'm hoping that you all have enjoyed your reading today. I know that I don't post all that often, but I have been doing great. Please feel free to continue to comment and I will keep doing what I do.

See you next time!

Magnetic Resonance Angiography of My Head

2008-12-11T19:22:00.002-06:00

Today, I had an MRA, or magnetic resonance angiogram, done of my head. For those of you that did not know, my mom died last month from complications after a burst brain aneurysm.

I had a stroke back in early 2005. With that, and with my mom's death, my neurologist recommended that I have an MRA done of my head. I had that done at the clinic today. The neurologist also wants me to get my homocystine levels checked to make sure my medications are still working. In addition, I saw my cardiologist earlier this week and she wants me to have my choloestrol checked. So, I'm going to get blood work done at LabCorp on Friday.

I do not know when I will be getting results. I am going to call the neurologist tomorrow and see if they need me to bring my films in or of they received their own copies from the clinic.

I'll post again when I know more. My health is good, overall. I have not had any problems or neurological symptoms. Both my cardiologist and neurologist said that I am doing well. My yearly EKG was perfectly normal.

All Continues to Go Well

2008-11-01T15:04:00.004-05:00

I realize it's been a few weeks since I have posted. But, everything has been going well. I had my last nephrologist appointment about a month ago. The doctor said that everything was still looking good and that I did not have to come back until January for my annual Glofil. I also had my annual bone density scan done that day. It looks like my bones are still about the same.

I have been doing well since my nose surgery. I am not coughing all the time any more, which is nice. I've also been enjoying less runny noses than I had before. So, I'm enjoying the better breathing and my nose is almost 100% healed up. It still hurts from time to time, but it's not bad at all.

I've got a neurology appointment in December to follow-up on the stroke I had a few years ago. I'm also going to have to tell the doctor that my mom has recently had a brain aneurysm. I've had a few CT scans done of my head, so I doubt that I have any problems. I just want to let the doctor know that there is some family history (now) that we might need to keep in mind.

So, I probably won't be posting too much (as you may have noticed). If you have any questions, just send an e-mail or post a comment!

Post Op II - ENT

2008-09-07T19:24:00.002-05:00

I had my second (and it seems, final) post operative appointment with the ENT on Tuesday this week. He peered deep into my nose (after allowing me an hour to catch up on my reading in the waiting room) and said that I am healing quite well. He said I should continue to use nasal spray and that the swelling was healing nicely.

I'm still blowing up a bit of dired up goop in my nose from time to time, but not very often. My teeth almost never hurt anymore when I blow my nose, and it doens't feel all "crazy" on my septum when breathing in sharply or blowing my nose. (see http://nmccart.blogspot.com/2008/08/nasal-surgery-no-more-nose-splints.html)

My nose runs a bit still, but that's to be expected as I am allergic to all things in the air. (see: http://nmccart.blogspot.com/2008/05/allergy-test-results.html) I'm glad that there is very little pain in sneezing or blowing my nose, though it is still sensitive to the touch (it hurts some).

That's about it for my nasal experience. Oh, wait -- I don't have that persistent cough any more!!! I guess that makes it all about worth it as far as the surgery is concerned.

Thanks for all of your prayers through this time. I appreciate it, and I know God listened and helped make the healing go that much faster and easier.

Nasal Surgery - No More Nose Splints

2008-08-18T19:16:00.002-05:00

Good evening everyone (and, if I didn't see you, good morning and good afternoon).

I had my first post-operative appointment from my Nasal Septal Reconstruction. I arrived at 3:40 for my 3:45 appointment, and was sent back to the room at 4:45. The doctor came in shortly thereafter and said that it would be a quick procedure.

He gave me some tissues to use to blow my nose when he finished. He said that the splints were being held in place my a stitch. He said he had to cut the stitch (not me) and then pull out each of the splints. Cutting out the stitch was not all that enjoyable, but I did like him removing the splint. It made my sneeze and my eyes watered, but I was able to breathe much easier. Then, he quickly removed the splint on the right-hand side. There was a lot of coughing, then I got to blow my nose.

Blowing your nose may not seem like a big deal, but you have to think about what I've been doing all week. I'm allergic to just about anything in the air, so my nose has been running (a lot) since last Monday. And, I wasn't allowed to blow it (shucks). So, getting to get some of that built up mucus (and dried blood) out of my nose was very nice.

It feels cold inside my nose when I breathe, at the moment. Also, if I blow too hard or inhale to sharply, then my septum feels as if it is flapping all over the place. Imagine holding a sheet of paper between your thumb and finger, one hand at the top of the page and one at the bottom. Then, turn the paper so that you are facing the edge that you are not holding. Blow sharply across it, and that's the the way my septum feels (or, that's the way I would describe it).

I don't have any worries. The doctor said that I am healing very well and he will see me in two weeks. He also said the slight numbness behind my two front teeth will get start to get better now. All I have to do is use some saline solution a couple of times a day for a while as my septum heals. They don't want my nose to get dried out.

Thank you all for your prayers for a quick recovery.

For those of you wondering: my next appointment with the nephrologist is September 11. So, you can expect an update on the kidney front after that time.

Surgery Complete

2008-08-11T21:04:00.004-05:00

Surgery went well. Nathan is at home resting and surprisingly not in TONS of pain. The surgeon said there were lots of polyps in his nose and once he's completely recovered he should breathe a lot easier. Today was a very long day because everything goes slowly at the hospital. Yesterday, the anesthesiologist called and said that surgery would be at 11:00 instead of 8:30 like pre-admitting told us. So, we got to the hospital at 9:00 and Nathan was finally rolled back to the operating room at 12:15. He spent 2 1/2 hours in stage one recovery before they moved him to the 2nd recovery room where I could be with him. All this to say it was a long and tiring day, but things went well and we're glad to be home.

Quick Surgery Update

2008-08-11T05:36:00.002-05:00

Just wanted to let everyone know - my surgery time was moved to 11:00 am for Monday. They called last night (Sunday) to let me know that my surgery time was moved a little bit later. For those of you that will be praying, 11:00 am is the time! Thanks!

Blog-Time Mail Bag

2008-08-09T17:43:00.001-05:00

Hey kids, it's time for another edition of Blog-Time Mail Bag. On this week's episode, we have a letter from Christy in Texas. Here's her letter, which was posted as a comment on my previous post:

My name is Christy McNiel. My husband, Gary has PKD and we are in the process of getting him listed on a transplant list. We live in Dallas and his nephrologist is at Baylor. We went to San Antonio to get evaluated for a kidney transplant because Baylor was having issues with our insurance. All is straightened out now and we now need to make an appointment with DTI to get Gary listed there. How was your expeience with Baylor? Who was your pre-transplant doctor, transplant surgeon and post-transplant doctor? Were you listed at more than one hospital? Sorry for all the questions. We are just trying to find out as much information as we can so that we know what steps we need to take next. Gary is not on dialysis yet, and we hope to avoid it , but we probably won't be so lucky. Thanks again!!

Well, Christy, first of all, thanks for writing. It's not too often that people send me mail full of questions. To start out, I'd like to say that it's too bad your husband also has PKD. Of the many things in my life right now, that's not one I'd wish on other people. I'm glad to hear that you got your transplant testing finished. Of course, you will need to do that every 12 months to stay active on the waiting list.

My experiences with Baylor went well, I think. I was listed at Baylor University Medical Center in Dallas as well as at Baylor All Saints in Fort Worth. They told me that I could list at both hospitals because they were in the same hospital network, but different transplant areas. This would get my name on two lists with only one set of paperwork.

As far as doctors go, I was with Dr. Silverstein at Dallas Nephrology prior to my transplant. He saw me from the time I moved to Dallas in 2001 until I started dialysis in 2005. Here, it seems that you get a different "specialist" nephrologist each time your kidney status changes. On dialysis, I had the clinic doctor, and wasn't overly impressed. I'm sure that any other blogs you ever read about clinical hemodialysis will tell you the same thing. I'm pretty sure that everyone considers those doctors as "drive-thru doctors" that are just trying to see all the patients in the clinic in under an hour. After transplant, I've been at Dallas Transplant Institute under the care of Dr. Nesser (and staff). They have two or three doctors and several physician's assistants that help coordinate the care of the patients. All the PA's report under your doctor, which means you get seen faster and more often (as otherwise, the doctor would never have time).

I do not remember who the surgeon was that performed my transplant at Baylor All Saints. Because I did not receive a kidney from a live donor, we did not really have any pre-transplant meetings with the doctors and surgeons. I just got a call at 3am and drove an hour or so to have a new kidney put in. They did a great job, and the hospital in Fort Worth was very nice. They had recently remodeled the transplant floor, and I enjoyed my short stay there.

I would advise being listed at as many hospitals and in as many areas as you are willing to drive to. It seems to me that if you are not going to have a kidney donated by a relative or friend that your best chance is having more chances. I mean, people talk about "the list" but there are really lots of lists, if you break it down.

There's probably a "master list" for each blood type. If you are a 100% match, then they will send the kidney to you (at least, that is how I understood it to work). Otherwise, you will just slowly move up the list in the area for your different matching characteristics. I think that there are six keys that the look at when matching. So, it would be my guess that you'd have a LOT of lists running around, with tons of names all filling a giant database somewhere.

The only advice I have is to follow all of the nephrologist's orders prior to the transplant. The longer your husband can stay healthy, then the less chance there is for him to have to go on dialysis (which is no fun). And, if he ever does go on dialysis, then he needs to be the model patient. Basically, the better you are for your doctors, the more likely you are not to have any flags in your file.

Good luck, Gary and Christy! Feel free to e-mail me at nmccart@gmail.com if you would like to talk more in a less-open forum. I didn't have any contact info in your comment, so I decided to post here, hoping you'd find it!

--

In other news, surgery for my sinus and nose is Monday at 8:30 am. Keep praying that all will go well. I'm guessing Jenny will post later to tell you how it went. Thanks!

Double Surgery!

2008-08-02T15:42:00.003-05:00

I know, double surgery sounds pretty bad. I probably should have title this post: "More News from the Doctor" or perhaps "What I've Learned" instead of Double Surgery. But, I did not. Now that you are tired of me explaining my choices, I guess I should talk about my surgery.

So, if you've been reading, you've noticed that I've been complaining of a chronic cough for a couple of months now. My nephrologist scheduled a CT scan for me on July 14, and they looked at my chest and sinuses. From there, I was referred to an Ear, Nose, and Throat doctor (or ENT for short - and no, not the Ents from Lord of the Rings). This doctor looked at my CT results, and looked up my nose, and said that I would need surgery to fix my problem.

I would normally have complained about surgery, except that this is what the kidney doctor had recommended as well. Since the two doctor had never spoken, I am going to guess that the opinion of two doctors is probably pretty good.

So, you've all read the post about my CT scan results by now. And, if you haven't, then go read it at: http://nmccart.blogspot.com/2008/07/many-tests-later.html

I am going to have a "Nasal Septal Reconstruction" to relieve my Deviated Nasal Septum. I am also having "Functional Endoscopic Sinus Surgery" to relieve my Chronic Sinusitis. What does this mean? The first one, the NSR (as I choose to call it) will fix my deviated septum. It's basically the seperation between the two sides of your nose. Mine is not straight, and they are going to fix it. It should help me breathe and drain better. The second surgery, or FESS (that doesn't sound as good as NSR did) is to clean the sinus polyps out of my sinus cavity (in my cheeks). I think they must have been there a while, because they are a decent size, and I have a runny nose ALL the time.

The surgeries will be on Monday, August 11, in Baylor University Medical Center in Dallas. It is outpatient surgery, so I should not be there more than a few hours. All I have to do now is to pick up my CT charts and pre-register. (The doctor wanted to look at the actual scans before doing any work).

Please pray that the surgery goes well and that I recover quickly. It should not be a long reocvery, but I am looking forward to getting rid of this cough and possibly even breathing easier all the rest of the time!

Enjoy your week everyone. I'll try to blog again after the surgery.

Nathan Finally Does Something (Unlike a Pirate)

2008-07-24T17:48:00.003-05:00

Previously, you may have heard me blog something about having actually done something for a vacation. Well, it's true!

I have decided that I much prefer being post-transplant than mid-dialysis. This summer, for the first time since our anniversary, Jenny and I went on an actual vacation. We spent five days (including drive time) visiting a friend of Jenny's that lives just outside of San Antonio. We visited Sea World and the Riverwalk, and had a wonderful time.

As a dialysis patient, setting up a vacation of this length would have been quite a pain. I would have needed to coordinate with my clinic to have my treatments done while I was in San Antonio, and to have my labs and information all transferred down there and then to hope that everything was ready for me when I arrived. I would also not have enjoyed walking around at Sea World all day, as I was anemic while on dialysis.

As a post-transplant patient, things were much different. All I had to do to plan was to bring lots of sun block and remember to pack up enough medication for the whole trip. It's amazing what a working kidney will do for you. I was able to enjoy our trip, walk around all day, and not feel sick the whole time.

In addition, my dad came to visit us here in Texas about a week or so after we returned from San Antonio. It was nice to see him while he was here, and we got a chance to go and visit the Dallas World Aquarium, to which I had not been in several years. He had not been down to see our new house in person, so it was nice to get to visit with him for several days.

And, finally this summer, Jenny and I are going to back Arkansas to visit with my mom. This is not an unusual journey for us since the transplant, but it's always nice. I've enjoyed the fact that we hired a new person at work to do part of my job so that I am able to take vacations.

So, that's a big pile of good news.

And now, I have a special mention that I would like to make for my aunt (who lives in New Mexico). You may recall that she participated in a PKD walk last year and was able to raise a LOT of money to fund research. Well, this year, she is working with the Datil Educators Club to help them raise money. Here is some more information concerning the Datil Educator's Club:

This group gives a scholarship to a sixth grade student at the Datil Elementary School in the amount of (at least) $500. This money is given to the student upon graduation from Quemado High School.

They are also the Agency that supports the USDA Commodities program in Datil. We distribute the Commodities that are available and supplement the boxes by purchasing food from the Roadrunner Food Bank in Albuquerque.

She has set up an account with Goodsearch.com to help earn the Dail Educator's Club some money. Here is the information:

What if Datil Educators Club earned a penny every time you searched the Internet? Or how about if a percentage of every purchase you made online went to support our cause? Well, now it can!

GoodSearch.com is a new Yahoo-powered search engine that donates half its advertising revenue, about a penny per search, to the charities that its users designate. Use it just as you would any search engine, get quality search results from Yahoo, and watch the donations add up!

GoodSearch.com also has a new online shopping mall which donates up to 37 percent of each purchase to your favorite cause! Hundreds of great stores, including Amazon, Target, the Gap, Best Buy, ebay, Macy's and Barnes & Noble have teamed up with GoodShop and every time you place an order, you'll be supporting your favorite cause (the Datil Educators Club, I hope!). You can read more abut GoodSearh in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

Just go to www.goodsearch.com and be sure to enter Datil Educators Club as the charity you want to support. And, be sure to spread the word to all your family & friends!!

Thanks in advance for your support!

So, if you are on the Internet, and need to search for something, you can use goodsearch to help the Datil Educator's club earn some free money.

Thanks for coming by today. See you all next time!

Many Tests Later ...

2008-07-17T16:00:00.000-05:00

Welcome back everyone! I know that it has been more than a month since I last posted, and many of you are wondering about how I am doing with my cough. Well, I still have it. It's been about six weeks now, and I've taken two different antibiotics as well as a cough suppressant and something to get the mucus out of my chest. None of the medications have done anything to help.

I visited the doctor last Thursday, and they told me to go and have a CT scan done of my sinus cavity and of my chest. Here are the results:

STUDY: CT CHEST/THORAX W/CONTRAST
Findings:
The heart and great vessels opacify with contrast normally. An aberrant origin of the left vertebral artery from the aortic arch is demonstrated.

Evaluation of the lung windows demonstrates no air space opacity, pleural effusion, or pulmonary nodule.

Polycystic kidney disease involving the right kidney is demonstrated. A left nephrectomy has been performed. Multifocal low-density lesions are present throughout the liver, compatible with hepatic cysts. Spleen is mildly enlarged, measuring approximately 14 cm in craniocaudal dimension. The osseous structures demonstrate no abnormality. No mediastinal, hilar or axillary adenopathy is seen.

Impression:
1) No acute abnormality is visualized on the CT chest.
2) Polycystic kidney disease involving the right kidney and liver. A left nephrectomy has been performed.
3) Mild splenomegaly.

STUDY: Paranasal sinus CT
Findings:
Bilateral frontal, ethmoid, and sphenoid sinuses are well aerated with no air-fluid levels or mucosal thickening.

Mild mucosal thickening along the medial walls of bilateral maxillary sinuses. Multiple mucosal retention cysts and/or polyps in the bilateral maxillary sinuses with the largest measuring 2 cm in diameter located along the left anterior maxillary sinus wall. Bilateral osteomeatal units are patent.

The cartilaginous nasal septum is midline. Concha bullosa of the left middle turbinate. There is mild right osseous nasal septal deviation with a 3 mm nasal spur with mucosal contact point with the inferior nasal turbinate.

Orbits and visualized intracranial contents are unremarkable.

Impression:
1) Mild mucuosal thickening of the bilateral maxillary sinuses with multiple mucosal retention cysts and/or polyps. Bilateral osteomeatal units are patent.
2) Otherwise, ethmoid, sphenoid and frontal sinuses are unremarkable.
3) Right osseous nasal septal deviation with septal spur.

And, after all of that, you'd probably like me to explain what I learned. Too bad. I learned almost exactly what you did. There's nothing wrong with my chest, and my sinuses might have a problem, but a "specialist" will have to look to confirm.

So, next up is a trip to visit an Ear, Nose and Throat (ENT) specialist. I've got to make some calls to the hospital tomorrow and see who they have on staff that can poke around inside my head. Hopefully, they won't leave anything up there. I know there's lots of room, but I don't want any rattling.

I've seen the doctor twice in the past two weeks (one for my regular check-up and one for this post-CT checkup). My creatinine was 1.0 and then 1.1 -- both are good numbers. Everything else looks pretty good on my labs, as well.

I think I'll have more to post in a later edition, but for now, I need to cut this one off. Don't want any of my readers falling asleep while they are here.

Tune in next time to find out more about what post-transplant patients are able to do with their vacation time!

Cold

2008-06-14T16:34:00.003-05:00

I'm guessing you read the title of this post prior to actually reading the post itself. If so, you may be wondering how I could be cold, in Dallas, in June. Well, I'm not! In fact, for the most part, it's pretty warm. The problem I'm having is "a cold." That's right, I only managed to go 17 months after my kidney transplant before I managed to get sick.

I woke up the last week of May on a Tuesday with a runny nose and a slightly sore throat. I didn't have fever or any other problems, so I was guessing that one of the many things I'm allergic to (see previous post for details) had attacked me in my sleep (that, or Jenny did). By Friday, I had started coughing and producing some of that lovely yellow phlegm that everyone enjoys so much. At that point, I decided it was not just allergies, so I quit taking Benadryl, started taking Mucinex, and called my family doctor for an appointment. I saw her the next Monday, and she gave me an antibiotic and said to try that for ten days. I kept taking the Mucinex (to get stuff out of my chest) and the antibiotic (to kill anything that might try to live in my lungs) for the ten days. That ended last Wednesday, and I was coughing still. I called the nephrologist on Friday (yesterday) and came in for a chest x-ray. Everything is fine in the x-ray, but he wants me to get some blood work on Monday. He also prescribed a cough syrup with codeine to help me. I started taking that today, Saturday, and I think it helps a little.

Wow, that was a long paragraph. This one will be short, to help balance.

That was much better. Let's see, I also saw my cardiologist this week for my regular six-month check-up. She did an echo cardiogram, and said that my mitral valve prolapse is still moderately severe (no change since last time). She said that since I had no change, I would not need an echo in six months, but that I should still come back at that time to see her again. She said she would only do another echo earlier if I had strange trouble breathing.

She also told me that a friend of mine that I met while on dialysis is currently seeing her for her pre-transplant cardiac workup. As a doctor, she did not actually mention this lady's name, but from her description, I was able to figure out who she was referencing. Apparently, this unnamed patient had mentioned that I had a blog and that I had mentioned my cardiologist on it. So, here I am, mentioning her again. I assured her that I've never said anything bad about her, mostly because I really like her and think she does a great job. In fact, if anyone were to ever ask me for a doctor to go see, I'd recommend her. She's very knowledgeable, and always seems to remember at least one non-medical thing that we talked about at our last appointment.

You might think that this isn't special, but let me give you my perspective on things. I saw the nephrologist at dialysis every week, and he barely had time to say hello before he was at the next patient. There was no conversation, and no feeling that he cared how I was doing. Yet, my cardiologist, who I see only once every six months, is able to remember things that I told her that are not medically-related, in addition to being quite friendly and seems to care about my health.

So, long post - but I'm supposed to keep taking the cough suppressant until Friday. If I am still coughing at that time, I have to call the transplant nephrologist back and get seen again. Hopefully it won't be a problem that long.

And, Jenny tells me to have everyone look at the links on the right-hand side of the page. I put one up, today, that links to my adoption story blog. Read it if you like. Or don't, I can't make you (or stop you).

Have a great weekend!!

May 13, 2008, Transplant Follow-Up

2008-05-13T10:38:00.003-05:00

I had my 8-week transplant follow-up on May 13. I went in at 7:40 am again, but I made an effort to drink a LOT more water before the appointment. My creatinine for the day was 1.1 (which is down from 1.2, and that's a good thing). My guess is the 7:40 time is what caused the discrepancy, as I do not feel any different.

All my other lab number look pretty good. My BUN is at 11.0. My magnesium and phosphorus are both a little bit low, but that's not a problem.

The only real complaint that I have is that Medicare is now my primary insurance company. This is a problem because my prescription drug insurance through work does not want to pay as a secondary company. So, I'm going to get stuck with either co-pays from work or with 20% from Medicare. For the Myfortic, I will be paying about $640 a year under my insurance plan. The Prograf will be another $480 per year. And, the Prednisone is probably $2 a year.

The annual cost for Myfortic, according to Medco, is $3,536.40. The plan pays $2,896.40, which is about 81% (meaning I save a little money over getting this through Medicare). The annual cost for Prograf is listed at $12,966.72 (for a year), with my insurance plan paying $12,486.72 (in that year). This is about 96% of the cost of the drugs, meaning I am getting a much better deal on these than I would through Medicare. The two medications combined have me paying about 7% of the cost, which is better than the 20% I'd have to pay through Medicare.

So, I guess I will continue to pay for Medicare for another 18 months, to cover my doctor's visits. It was nice not to pay for those medications in the past, but unfortunately, that's no longer an option. I knew it would be coming, but did not expect it this soon. So, it will be a cost to add in to everything else. Not a problem, just something to think about.

That's it for this post. More later, I think.

Allergy Test Results

2008-05-07T16:46:00.003-05:00

I had my allergy test on Tuesday. It was not too bad, though I was very allergic to dust mites. I reacted to them as soon as she put that swab on my back. The allergy test involved me taking off my shirt, and laying on my stomach for 15 minutes. The nurse put a LOT of swabs (86, I think) on my back, and then did a small scratch on them, to expose me to the allergen. After about five minutes, she came in and wiped off the ones I had the greatest reaction to, and then was back about 10 minutes after that to clean me off, write down results, and give me an anti-itch spray.

Here are the results:

GRASS POLLEN: (see types)

Bermuda - yes
Fescue - yes
Brome - yes
Orchard - yes
Red Top - yes
Rye - yes
June/Blue Grass - yes
Johnson - yes
Timothy - yes
Bahia (Dallis) - yes
Wheatgrass - yes

RAGWEED POLLEN: Yes
POLLEN OF OTHER WEEDS: (see types)

Careless Weed - yes
Dock - yes
Pigweed - yes
Western Water Hemp - no
English Plantain - yes
Firebush (Kochia) - yes
Sage - yes
Cocklebur - yes
Lambs Quarter - yes
Marsh Elder - yes
Russian Thistle - yes
Sorrel - yes

SPRING TREE POLLEN: (see types)

Cottonwood - yes
Ash - yes
Box Elder/Maple - no
Hackberry - yes
Willow - yes
Mulberry - yes
Walnut - yes
Pecan - yes
Oak - yes
American Elm - yes
Sycamore - yes
Privet (Ligstrum) - yes
Pine - yes
Mesquite - yes

MT. CEDAR POLLEN - yes
CEDAR ELM POLLEN - yes
MOLDS - FUNGUS - yes
HOUSE DUST - yes
DUST MITES - yes
FEATHERS-DOWN - yes
COCKROACH - yes
CAT DANDER - no
DOG DANGER - yes
HAMSTER - yes
HORSE DANDER - no
CATTLE - yes
Other:

Peanut - yes

So, I disagreed with the doctor about Cats and Peanuts. I told him that cats make me sneeze, just to see them. And, I've never reacted to a peanut. But, that's the way the tests came back.

They suggested reducing my exposure to being outside to help with outdoor allergies. They said to not open doors/windows at home to get "fresh air" as that will let in more allergies.

They told me to continue on the Nasonex and to go back on my Zyrtec (or generic stuff). They also added Astelin nasal spray to my regimen. I'm supposed to mix and match until I find the minimum number of medications that work for me.

So, I expect to hear lots more requests from Jenny to get a cat (which I will continue to deny). I also went to the local health foods store (Sprouts) and bought a new deodorant. It's called "Crystal Stick Deodorant" and contains only "natural mineral salts". You are supposed to get it wet, rub it on, and then dry off the stick. So far, it's working pretty well. I think my arms have healed quite a bit since I started using it. I'll see how I like it after a month or so.

That's about it for today. Good night everyone!

TB Results: Probably No

2008-04-29T06:56:00.005-05:00

I called my nephrologist's office yesterday morning. I wanted to know if they had read my x-ray that was taken Wednesday morning. I figured two full business days would be long enough. They called back and told me that the x-rays results had not been filed by the radiologist yet. However, my nephrologist took a look and said that it is unlikely that I have contracted tuberculosis.

So, all is good news on the TB front. In other news, I visited an allergy doctor last Friday, to complain about my runny nose and stopped up ears. He told me my ear was just full of wax (so I had that flushed out on Monday afternoon). He switched my allergy medicine from Zyrtec (well, generic cetrizine) to Nasonex. I've been taking it a few days, and I'm not sure what I think yet. I have a full allergy test scheduled for next week, just to get an idea as to what makes my nose run.

The allergy doctor must work mainly with nasal allergies. When I asked about my allergic reaction to just about every deodorant I've ever tried, he said he'd have to talk to a dermatologist. Oh well, I'll keep trying different things, then.

Hopefully, the allergy test will give me some good information and maybe help me avoid the sniffles on a more regular basis.

That's it for today.

Chest X-Ray

2008-04-23T15:13:00.002-05:00

Quick update: I went to the doctor's office and had a chest x-ray at about 10:00 this morning (Wednesday). The technician said that the radiologist should give me a call within the next day or two. I still feel fine, so I'm guessing nothing is wrong.

Thank you to everyone that has been praying! I do appreciate it.

TB Scare!

2008-04-21T16:29:00.002-05:00

Welcome to the blog for today. First things first, if you did not read my blog from March, you can find it here: http://nmccart.blogspot.com/2008/03/happy-birthday-to-me.html

I went home from work at about 2:00 pm today. I heard rumors around 1:00 or so that someone in our office, on my floor, had tuberculosis. For those of you that don't know, tuberculosis, or TB, is:

Reference (http://www.webmd.com/a-to-z-guides/tuberculosis-tb-topic-overview)
Tuberculosis (TB) is a bacterial infection that is most often found in the lungs (pulmonary TB) but can spread to other parts of the body (extrapulmonary TB). TB in the lungs is easily spread to other people through coughing or laughing. Treatment is often successful, though the process is long. Treatment time averages between 6 and 9 months.

Now, this is an infectious disease, which is easily spread through coughing. I do not know if I have caught it, but I am going to call the transplant office in the morning to schedule a chest x-ray. I called them the minute I left work, asking what needed to be done. They returned my call about 4:30 (after the scheduling office was closed) to tell me to set up a chest x-ray to confirm if I did catch TB.

My boss called and said that the environmental people were going to come out and clean around the infected person's cubicle (which is not near me) as well as all the common areas in the building. They are supposed to disinfect everything overnight, so I should be safe in the morning. I haven't decided if I want to wear a SARS mask or not, but I'm considering it!

So, tomorrow, I will schedule my chest x-ray. It is doubtful that I have anything, but it is better to be safe than to be sorry (especially since it can take a year to cure TB in a healthy person).

That's it for today. I'd appreciate any prayers my direction in regards to my upcoming x-ray. Thanks!

Happy Birthday to Me!

2008-03-18T16:07:00.003-05:00

Well, March 18 is my birthday. I am now a thirty year old man with a new (to me) kidney. If it is one year old, then does that make my average age 15?

I'm actually posting this in mid-April (the 21st). I fell behind in my blog postings, and I wanted to get this information on line prior to making any new posts. It's just your normal "lab report" plus a little bit of non-kidney news at the end.

My lab appointment this time was at 7:30 am. I think that may be the reason that my creatinine was up to 1.2. It has been 1.0 since my transplant, but I normally see the doctor later in the day. I don't think I had enough time to drink a lot of water before my urine test, so there may have been a little more junk in there than normal. My next appointment (May 13) will also be at 7:30. I'm going to try and see if I can drink at least 20 ounces before I leave home that morning. Perhaps that will help with my creatinine.

All my other lab numbers looked pretty good, and pretty similar to last time. My BUN was still at 14.0 mg/dL. My magnesium remains a bit low, at 1.6 mg/dl (on a normal range of 1.7 - 2.1). Everything else looked great.

I also had my one year bone density scan done. It sounds like I am pretty close to the same place I was six months ago, which is pretty good. The only change the technician offered was that I should exercise with some weights, just to add some resistance to my bones to cause them to be a little stronger.

Aside from that, I'm doing pretty good. I don't have to go see the doctor again for eight weeks, which is nice.

Here's the news I mentioned earlier:
Jenny and I are now working towards adopting a child!

Rather than bore the kidney-only readers with information about our adoption process, I have set up a new blog. You can find it at: http://nmccart-adoption.blogspot.com/

Have a great week, and see you all next time!

My first "Annual" Kidney Exam

2008-01-23T20:50:00.000-06:00

Good evening everyone!

I had my one-year post-transplant Glofil appointment on Tuesday. My score was 81. For those of you keeping track, I was 86.1 right after the transplant, 82 at the six-month mark. I asked the doctor (physician's assistant), and she said that the "normal" range for a post-transplant patient was between 40 and 60, so I am doing very well.

I received a Glofil-related question on my comments (on the last blog). Here's the question:

Jugie C has left a new comment on your post "You're a Genius":

My grandson (Montgomery, TX -- 10yo) had his 1st GloFil test today (01/15/08). He was born with inadequate kidney function. Can you point us to an explanation of what "normal" is (his was 21.9). My daughter was informed that 70-140 is the adult normal.

Well, Jugie, I asked the nephrologist about your question. She printed me a list from http://www.renal.org/ about Glofil results. For a person with Chronic Kidney Disease, the kidney function is measured (or estimated) with a GFR (Glomerular Filtration Rate). There are five stages but kidney function is normal in Stage 1, and minimally reduced in Stage 2.

Stage 1 is a GFR of 90+: Normal kidney function but urine findings or structural abnormalities or genetic traits point to kidney disease.
Stage 2 is a GFR of 60 - 89: Mildly reduced kidney function, and other findings (as for stage 1) point to kidney disease.
Stage 3 is a GFR of 30 - 59: Moderately reduced kidney disease.
Stage 4 is a GFR of 15 - 29: Severely reduced kidney function.
Stage 5 is a GFR of < 15: Very severe, or endstage kidney failure (sometimes called renal failure)

The nephrologist said that UNOS (the transplant people) require you to score less than 20 in order to qualify for a transplant. She also said that once you fall below 15, they normally recommend dialysis (depending on the patient, but it's <15 for almost everyone).

I also got my lab results back. My creatinine remains at 1.0 (which is good). My cholesterol levels all looked good. My bad (LDL) was at 61 (which is on the low end). My good (HDL) was a little lower than they like (only 36.0). And my triglycerides were at 139, which is excellent. The only recommendation is cardio-vascular exercise to improve my good cholesterol numbers. Aside from that, she was happy. My Phosphorus was a little low this week at 2.5 (with the normal being between 2.6 and 4.4). The doctor said to keep eating the foods that are higher in phosphorus (all the stuff I could not have on dialysis).

From glancing at the second page, my MONOCYTES were a little high at 0.84 (and the normal range is 0.10 - 0.50). The Internet said that monocytes are a second line of defense against infection. I'm guessing they are elevated due to this foreign kidney being in my body. I'll have to watch it on the next lab report and see if it remains a problem. This level has not been elevated in the past.

That's it for this week. I have another appointment on my birthday. I'm going to try and go in early to see if that helps with the congestion at the office. They have been remodeling their office, and are serving patients in a smaller rental building. It's crowded and there is never any parking. I'm hoping that perhaps being the first appointment of the day will give me a chance to get seen quickly and to get a place to park.

Have a great week. I'll try to post again before mid-March!

You're a Genius

2008-01-15T08:19:00.000-06:00

So, I am not normally a fan of the "my blog says this about me" quizzes on the Internet. I saw this one on a friend's page, and she had been rated as "elementary level" and I wanted to see where I fit. It seems (probably based on the words POLYCYSTIC KIDNEY DISEASE in the title) that you have to be a genius to read my blog. So, good news for all of you. You're a genius.

So, just to make this a valid post, I will put in some information about me (and possibly my kidney). It has been cooler here in Texas over the last several days, and I am feeling it. Back in the summer, I was afraid that I was always going to be hot all the time after the transplant. But, it seems like that won't be a problem. I go to work and my thermometer says it is 73.9° F in my cubicle (though, I don't believe it, as the next cube over is 69.9º) and I am freezing. I have been enjoying a new blanket I got for Christmas and some new warm sock/slipper things.

My medication is still going well. This is my last week for 7mg of Prednisone. Next week, I move down to 6mg. The doctor said (several weeks ago) that I could move from 10mg to 5mg per day. I just had to reduce by one milligram every four weeks. He actually said every month, but it's easier for me to keep track of when I change if I do it every 28 days (since my medication holder is set for seven days). I don't notice much difference, but it is nice to be on less of the medication that makes you hyper and have more of an appetite.

I am working on being more regular about exercising. We got a pre-owned treadmill from some friends right before Christmas, so that has been nice. I can walk on it without having to drive to the exercise facility that is provided by work. And, yesterday was nice enough outside in the afternoon that I actually went out and rode my bike for a little while.

We celebrated Jenny's birthday on Sunday. She said that she really enjoyed it and doesn't mind growing older. Mine is not for two more months, so I get to make fun of her for being older than me once again (for a short time). I've enjoyed my last year (with the new kidney) and I hope that it can bring me through the next thirty years.

That's about it for today. The Glofil test is set for January 22. I should get to hear from the doctor about how great I'm doing and see if there is anything I can do to make it better. I'm always looking for ways to make the kidney last a little longer.

See you next time, geniuses!!

Year Two: Day One

2008-01-12T10:26:00.000-06:00

Yesterday (January 11, 2008) officially marked my one year Kidney-Versary! (Yes, spell checker, I know that isn't a word, stop underlining it with that red squiggly line).

It has been a wonderful year. I just spent twelve months NOT having to go to dialysis. That was probably the best change for me. I also got to eat more food (like a normal person), and I was able to put on a little bit of weight. I now weight 185 lbs (which is good when you are 6 feet 2 inches tall). I got to spend more time at home with my wife, and have generally enjoyed life all the more since my transplant.

I'd like to thank everyone that has been praying over the past year. The doctors say that the first year of transplant is the hardest to get past. Once you make it one year, your chances of rejection fall greatly. I am hoping that the statistics will hold true for me and that I will get a few more decades out of this new kidney. Keep on praying that God will protect me and this wonderful transplanted kidney for many years to come.

I have a Glofil test coming up in about two weeks. This will give the doctors a one year picture of how my kidney is doing. I'll be sure to let everyone know what's going on after I find out. I should probably also have another bone density scan a week or two after that. Then all of my records should be up-to-date in their systems.

That's about it for today. More another day!!

toDwI'ma' qoS yItIvqu'

2007-12-21T16:29:00.000-06:00

Welcome everyone once again to my blog. I know, I don't post for six weeks, then I get on here twice in almost no time at all. What's the world coming to?

You might have noticed the title of today's post. I've been brushing up a little bit on the Klingon language, and discovered how one might wish a speaker of Klingon a Merry Christmas. You would say, toDwI'ma' qoS yItIvqu' or literally ''Our-savior's birthday you-enjoy!''). Why do I know this? Well, I think if you've been reading the blog up to this point, that answer is quite obvious.

Here's the latest news from the cardiologist: my mitral valve prolapse continue to be "moderate to severe," as it was six months ago. She said that she was pleased, and I will have to come back in six months to have another echo cardiogram and let her see if it stays the same. She also asked if I had noticed any more palpitations, but it had only been two days since I had last seen her, so I had to tell her no. I had mentioned at my last appointment that I noticed my irregular heartbeat about once a month or so, but it is not too bad (just noticeable).

Well, that's about it for me for this week. I hope everyone enjoys their Christmas and any time off of work that they might receive. I've got a picture (not all that great, but what do you want) of my Christmas tree for everyone to enjoy!

Until next time, remember the words of the Christmas cow, "Looooooooooow"

11 Months Later: The Transplanted Kidney Works Great!

2007-12-12T17:39:00.000-06:00

Well, it has now been a little over 11 months (not since I last posted, silly) since I had my kidney transplant. I have to say that everything is going great. I went to my regular post-transplant clinic this week and the doctor said that I am doing great.

My creatinine remains at 1.0. My BUN is still 12.0 (which is good). Sodium, potassium, glucose, phosphorus, and all the other chemicals look great, too. The only thing that is "out of normal" is my magnesium, and it has been slightly low ever since the transplant, so I do not think that they are worried about it too much.

I have my one-year Glofil test scheduled in January. If the results are normal, the doctor said that I will only have to go back for a Glofil every January (which is nice). The Glofil is always at least a half-day appointment, so it will be good from a time management standpoint to not have as many of those.

I had a renal sonogram while I was in the office on Tuesday. The doctor wanted to make sure that my old Polycystic Kidney is not in there causing any problems. The technician obviously could not tell me anything that she saw, but she let me look at the kidney and it looked just as gross as ever. She also showed me the new kidney, which was just perfect looking. It had that great kidney shape, and obviously is doing it's job quite well.

In medication news, I am slowly working down my prednisone dosage. I had been on 10 mg for several months, and since I am almost at my one-year anniversary, I asked (last time) to get on a lower dosage. So, the doctor said to drop my dosage one milligram per month. I am on my third week of 8 mg, so I'll be down to 5 mg by the end of February (I think). I have not started noticing any of the side effects, like always having the "munchies", going away yet. Maybe that won't be noticeable until I have been on 5 mg for a while.

I also saw my cardiologist on Tuesday. She wants to get another echo of my heart to make sure the my mitral valve prolapse is not getting any worse. She said that it still sounds good, but she still wants to take a look to make sure. She also increased my dosage of atenolol (for high blood pressure) from 25 mg a day to 50 mg a day. I just started that, so I don't know the full effects yet. She said it is possible that I will become dizzy, so I am watching out.

Work has been extra-super-crazy for the past month or so. The company is doing a giant software upgrade on some of its internal systems, and I have been deeply involved in End User Acceptance Testing. This is taking several hours a day every day, and has not quite come to an end yet. I am hoping that we will be done before Christmas. I really don't want to keep working on this project next year (for 3 or 6 more months). At that rate, it will be time to upgrade again before this upgrade is completed.

Other than that, not much else is going on. I played my violin in a couple of Christmas concerts, and that was fun. It's been cold and rainy in Texas (but not freezing cold, just 40's cold).

I have that echo on my heart scheduled in the next week or two, so I'll let everyone know what's going on then. Until later, have fun, and enjoy your Christmas!

Tuesday's Clinic Appointment

2007-10-28T15:38:00.001-05:00

Well, I went to the clinic on Tuesday (the 23rd). The doctor's office moved down the street a few blocks to remodel their building. It wasn't too bad, though it was smaller than their normal office. Hopefully the newly remodeled office will be nice and have a much larger waiting area when they get it remodeled.

I had to call to get my lab results, as they did not move the lab facility. My creatinine is still at 1.0. There were no problems on any more of my blood work or urinalysis. I noticed a little bit of blood in my urine on Friday night, but it wasn't that much. I think perhaps a cyst burst in my old PKD kidney, as it had been hurting some the past few days. I called the doctor, but they said just to stay well-hydrated and not to worry about it unless it got a lot worse.

Not too much else is going on. I have to sign up for the new insurance year at work in the next week or two. I will have to talk with our HR department, because Medicare is going to switch to being my primary insurance in April. I have to know what level of insurance to get if I am going to be on Medicare as the primary instead of United Healthcare.

See you all next time. I hope to have more information then.

Answering a Question

2007-09-26T10:38:00.000-05:00

Well, my last blog post was on September 13. It seems that I also received an e-mail question that day from one of my faithful few readers. I apologize for it taking me SOO long to get to your question, but I thought I would answer it here for all to enjoy:

Hi Nathan,

I have been on your blog list for a time now. I don't know if you have time to answer a question for me, and if you don't that's okay! I am a 53 year old woman, and I have PKD. It was diagnosed last year after I was having chest pains. They found it in the scan that they did. After that I have had numerous tests, but it boils down to just taking blood pressure medicine for now! My question is about eating protein. My doctor says don't eat too much protein and mostly chicken (OR, rather not much red meat). However, do you know if it just about the quantities going through the kidneys....and that maybe I could eat more if I string it out over time? Yes, I know I can ask my doctor, but I would also like to see what someone else's experience is! I have found your blog very encouraging Nathan. And, I have been praying for you too! You have been through so much with this disease, and I think you are doing so great. And, I like that you are keeping up living your life!

God bless,

Cindy

Well, Cindy, I am glad that you asked. I try to take time to answer all the questions that I receive, and if the sender doesn't say otherwise, then I try to answer it on the blog so that the other readers can benefit from my "wisdom" of sorts.

Like you, my doctors also advised that I cut down on the protein while I was working my way toward kidney failure. I found that your best bet is to eat as little red meat as possible. If you do eat some, then you should string it out over time. You don't want to have steak and eggs for breakfast, a juicy cheeseburger for lunch, and meatloaf for dinner. If you have steak and eggs for breakfast, then don't eat any more red meat that day.

If you really enjoy your red meats, then I would recommend (just me, I am not a doctor) staying to no more than one serving per day. That will give your kidneys less to process, which should, in theory, allow them to function longer.

Thank you for your prayers and for being a faithful reader. I will try to be a bit better about answering questions that I get to my blog posts. In fact, I'll probably do another question this week, if I get some more time to do it.

Oh, wait, in other news, I got my 24-hour urine results last week. It seems that my creatinine clearance is still over 100, which is wonderful. I guess the variance in my Glofil results is just a variance which should not concern me.

Thanks for coming by to read today. Hope it was informative and helpful to anyone wanting to eat more chicken. See you next time.

Update on My Aunt's PKD Walk Donations

2007-09-13T17:00:00.000-05:00

My Aunt (who lives in New Mexico) has been raising funds for the upcoming PKD walk. As of today, she is half-way to her goal of $250.

You can check out her page here:
http://www.pkdcure.org/site/TR/Events/General?px=1299262&pg=personal&fr_id=1761&et=IC1_zUytcKWwSoFVuudxhQ..&s_tafId=14640

Thank you to everyone who has donated. The money goes to help research into Polycystic Kidney Disease and hopefully some day will help fund the cure for this disease (if not for me, then for others).

In other news - it has been just over 8 months since I had my transplant on January 11, 2007. I am doing well and am glad to have received the new kidney. I am thankful that I have been doing well so far.

I turned in a 24-hour urine and a blood test last Monday. My Glofil test was a little lower last time than it had been, and it worried me just a little bit. I asked the doctor if there were any problems and they suggested that we do some testing. I have not heard anything from them yet, and I hope that means that nothing is wrong. I guess if I have not heard anything by Monday I will probably call them and find out my results.

But, all is well here. I look forward to good news from the doctor. And, I look forward to the next eight months being just as good as the first.

See you later!

Help End Limit on Drug Coverage for Kidney Transplants!

2007-09-10T19:06:00.000-05:00

The PKD Foundation has recently sent me an ACTION ALERT!

Action Alert:
Help End 36-Month Limit on Vital Anti-Rejection Drug Coverage for Kidney Transplant Recipients!

More than 60 percent of PKD patients will develop kidney failure and be forced to rely on dialysis or a transplant to live.

While Medicare covers dialysis indefinitely, in many cases, it will only cover vital immunosuppressive drugs for kidney transplants for 36 months! Once this period ends, transplant patients are forced to find other ways to pay for these expensive medications.

Many cannot afford to continue treatment.

You can help end this 36-month limit and make a true difference in the lives of PKD patients nationwide!

Take part in this Action Alert today!

Learn more about other PKD Foundation efforts, such as the Walk for PKD - this month in cities across the country!

Doctor's Visit - 08/28/2007

2007-08-30T15:27:00.000-05:00

I had my regular follow-up clinic visit on Tuesday. The doctor said that I was doing well, and that my lab reports all looked good. My creatinine remains at 1.0. My magnesium is up from 1.1 to 1.6. A normal magnesium is 1.7 to 2.1, so I guess that is good. The rest of my numbers looked about like I have expected them to. My White Blood Cell count is at 7.3, which is always nice.

The doctor said my bone density test was similar to the first one they gave me. I scored exactly the same on my lumbar region (spine). I actually got a slightly higher score on my hip bone, which I guess is good. That means that my exercise and calcium supplements have been working. Speaking of exercise, I got back to doing that this week. I got my ID badge at worked coded so that I could use the fitness facility we own. It's about 15 minutes away from work, so I'll try to go there two to three times a week and get some walking done.

I talked to the actual doctor about the Glofil problem that I mentioned last time in the blog. My score has gone down about 10 points since the first test after the transplant. The doctor said she didn't know what exactly was wrong, or if it was even a problem. She asked me to do a 24-hour urine test to make sure my clearance was still good.

I'll have to see how I am doing the next time I go in. But, the doctor doesn't seem worried. She didn't need me to come back for eight more weeks.

See you all later! Enjoy your Labor Day weekend. I know I will. My mom is coming in town to see the new house. Should be loads of fun.

Bone Density Scan - Results

2007-08-14T17:09:00.001-05:00

Here are the results from my Bone Density Scan (taken back on August 6).

This was the worse of the two results (taken from my hip bone). Though I do not know exactly what this means, there is a small chart that gives me a usable amount of information.

The small circle in that chart shows that I am at "Increased Fracture Risk." The WHO (in 1994) classified this as Osteopenia.

So, I think these are pretty similar to the results that I got back in January. If there is greater demand for more information, then I can try to find out more from the doctor when I see him next week.

So, that's it for today. Please pray that my bones don't get worse in the next six months. I am going to get back to doing regular exercise to try and keep my bones in good shape. Thanks!

September 2007 PKD Walk

2007-08-12T20:15:00.000-05:00

Greetings everyone!

I got a message from my aunt this week (she lives in New Mexico). Here is the letter that she is sending to all of her friends:

A message from Beverly Laude laude@gilanet.com.

Dear Friends and Family,

Most of you know that my nephew, Nathan, has Polycystic Kidney Disease and received a kidney transplant in January 2007. Now, he is leading a (mostly) normal life, no longer dependent on dialysis to live. My niece, Angela, also has PKD, but so far is not facing as many devasting medical problems as Nathan.

I am participating in the Walk for PKD. I've set a challenging goal to raise mondy to fund research to find a cure for PKD! With your help, we can make a real difference, together.

Polycystic Kidney Disease (PKD) is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. In fact, it affects more people than cystic fibrosis, muscular dystrophy, sickle cell anemia, hemophilia, Down syndrome and Huntington's disease--combined! Still, few people know about it. There is no treatment and no cure... Yet. I am walking to change that.

You can make a secure donation online by simply clicking the link at the bottom of this message. Whatever you can give will make an impact - no donation is too small! I truly appreciate your support and will keep you posted on my progress.

Thank you for helping me help find a cure for PKD!
Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://www.pkdcure.org/site/TR/Events/General?px=1299262&pg=personal&fr_id=1761&et=xvlZnu901lYDo5psiWr85Q..&s_tafId=14537

She is going to walk in the 2007 PKD walk. If you would like to help in the fight to find a cure for Polycystic Kidney disease, please visit the link above and donate some money to help find a cure. You may not know me or anyone else with Polycystic Kidney Disease, but this could be your chance to help find a cure to the most prevalent genetic disease in our world today.

Please take a minute to visit her link and donate, if you feel so led. Thanks for taking the time out of your schedule for this message (and hopefully, become a sponsor).

Enjoy your day!!

Question Received Via E-Mail

2007-08-08T07:28:00.000-05:00

I got an e-mail on Saturday asking me a question. I will reproduce the e-mail here (minus any personal information) and attempt to provide the best answer that I can.

EMAIL FROM: M.R.
DATE: AUGUST 4, 2007 at 5:42PM

Hi Nathan...

I'm writing in search of some better answers than what we are getting. My good friend is 34, male, and has PKD ( he was diagnosed about 3 years ago). We have yet to find any good help. His urine has been bloody for a week, after not being able to get into a doctor he went to the emergency room at a local hospital. After some testing and a CAT scan they said he has kidney stones and sent him on his way. Still unable to get into a specialist and still bleeding... I'm trying to be supportive and came across your site in my online searching for answers. Any advice or directions you could point me in for more answers/research would be much appreciated. I'm sure you are a busy man, but I thought I'd reach out. Your blog is great I thank you for sharing your experience!

Thank you for you time
----------

Well, I can tell you right off that I have had several kidney stones in my life. The first one was back around 1998 or so, while I was in college. Several of my kidney stones came with blood in my urine, which is never a good thing to see. If the hospital sent him home after seeing kidney stones on a CT scan, then it probably means that the stones are small enough to pass on their own. Now, having said that, the "passing" is not that easy. My first suggestion would be to see if he could get a doctor to prescribe him some pain medication that is a bit stronger than the over-the-counter stuff. I've had kidney stones that lasted anywhere from a day to a week, but usually on the shorter end, once I started feeling the severe pain. I would notice the blood in the urine for several days before having any pain (if it was a kidney stone). If you find that your friend has not passed the stone within a day or two, he should head back to the hospital to complain again, letting them know how long the pain has been going on. If he is not in terrible pain, then the only thing to do is to wait.

As long as his kidney function is still strong, the only other thing to do is to drink a lot of water. That is the only way the kidney stone will get passed. He has to keep drinking water to move the stone out of his system. In fact, I noticed that I usually would have a kidney stone about once a year or 18 months, when I had slowed down on drinking water. It is highly important to stay well hydrated. It is my understanding that keeping well hydrated will help prevent the stones from forming, or will help keep them small enough so that they do not hurt (as badly) when being passed.

And, of course, with Polycystic Kidney Disease, blood in the urine will be a common problem. Does your friend have a regular nephrologist? Is he going to see the nephrologist on a regular basis? That is the only other advice I have. Stay current with his kidney doctor so that they can track the progress of the disease and keep him ready for any problems that may come his way.

-----

I hope my e-mail was helpful. I just sent that exact text to M.R. earlier today. I hope everyone is having a good week. I had my bone density scan on Monday, and I am still in "Increased Fracture Risk" like I was six months ago. I'll know more when I see the doctor in a couple of weeks. If I get a chance, I'll try to post the results of the test between tomorrow and the next doctor's visit.

Have a great day!

Answering Comment Questions (and more)

2007-07-30T08:51:00.001-05:00

Good morning everyone! It has been almost two weeks since my last post. The good news is that there continues to be nothing wrong. I am feeling well, and am enjoying having energy and motivation to do all the work that a new house requires.

I received a comment on a previous blog post:
(http://nmccart.blogspot.com/2007/07/post-transplant-glofil-3.html)

The question comes from Bmaddny on July 25:
Hey, what was your creatinine prior to your transplant?

Well, Bmaddny, I'm glad you asked! That question can be answered in multiple parts. Way back in 2005, while I still had two kidneys that soft-of worked, my creatinine was between 2 and 4.0, depending on the month they were checking. Once my left kidney got infected and removed, my creatinine shot up to 6, and then I think even higher. By the time I was on dialysis, it was not unusual to see a creatinine of 9 or 10. So, depending on when in the past you were looking, I have had a multitude of creatinine levels. The 1.0 that I am getting now, post-transplant, is the best that it has ever been (since it has been tracked). I hope that helps!

(and more)
Well, the title hinted, and here it is! I finally scheduled my bone density scan for Monday, August 6, 2007 (in the afternoon). That way, the doctors will have three weeks to review the results prior to my next appointment. Then, they can tell me if I am doing better or worse than I was on January 25 (when I had my first-ever bone density scan).

Finally, a medication update. I do not recall when the last time I updated everyone was, so here is the current list:

9 am: Bactrim (400mg/80mg)
9 am: Calcium +D (600 mg)
9 am: Cerefolin (PAL/M5) (two)
9 am: Folic Acid (800mcg)
9 am: Myfortic (360mg)
9 am: Prednisone (10mg)
9 am: Prograf (5mg)

9 pm: Atenolol (25mg)
9 pm: Calcium +D (600mg)
9 pm: Fish Oil (1000mg)
9 pm: Lovastatin (20mg)
9 pm: Myfortic (360mg)
9 pm: Prograf (5mg)
9 pm: Zyrtec (10mg)

Have a great week everyone!!

Post-Transplant Glofil #3

2007-07-18T10:06:00.000-05:00

Good Morning! (And, if I don't see you, good afternoon, good evening, and good night).

Tuesday, the 17th, was my 6-months Post-Transplant Glofil appointment. As always, if you are unfamiliar with the Glofil test, you can read about it in a previous post here: http://nmccart.blogspot.com/2007/02/upcoming-first-post-transplant-glofil.html

My score this time was 76.3. That is down from the last two scores. On 2/22, I got 86.1 and on 5/14, I got 82.0. I spoke with the nurse at Dallas Transplant Institute this morning, and she said that this is not a problem. Since my creatinine is stable and my urine output is stable, then there are no worries. Speaking of that, they ran labs on Tuesday as well, and my creatinine remains at 1.0 (which is wonderful). The next Glofil comes 9 months after my transplant date, which should be around October 11, 2007.

And ... while we are talking about lab reports ... the only problem the doctor pointed out on my lab report was that my triglycerides are pretty high. The acceptable range is 32.0 to 238.0 mg/dL. On 6/19, my triglycerides were at 175.0. But, yesterday, my triglycerides were up to 281.0. The cardiologist had previously complained that my triglycerides were too high, so now I need to work with the two doctors to get on some medication to get that down. The transplant doctor suggested that I might could take Fish Oil supplements, if the cardiologist will approve. I am going to send my lab reports to the cardiologist to see what dosage of fish oil that they suggest in my case.

The only thing left to schedule for the transplant clinic will be a Bone Density test. It seems that they cannot do the bone density and the Glofil at the same time, due to the Glofil using a radioactive dye that would interfere with the bone density. The bone density test is pretty quick, so I will see if I can get one scheduled for some morning soon (they want it done this month).

So, that's all for today. Maybe I'll find out what the cardiologist wants so I can get my cholesterol down. Have a great day!

July 11, 2007

2007-07-11T11:21:00.000-05:00

It has been over a week (almost two now) since my last blog update. I received several excited e-mails after my last post. Everyone was so happy to hear that I had nothing to update! So, that's always good news, though I don't know how exciting it is to read.

Let's see ... what can I say for this week's post? Yesterday (Tuesday the 10th) was my third wedding anniversary. Jenny and I have been through a lot over the past three years. We were glad to be able to celebrate at home (and not in the hospital) this year. We didn't have to go to dialysis or the hospital, so it was a wonderful anniversary!

I got my Glofil procedure scheduled for July 17, which is the same day as my next clinic appointment. If I am right on my timing, I think they will want to do my second bone density scan on the 17th as well. My first scan showed that I was a little light on my bone density. Hopefully, my density will not have decreased in the past six months.

The only other thing I can think of that is possible is that the doctor may take me off of the Bactrim. I've been on it for six months, and I think that the original nephrologist said that I would only be on the Bactrim for six months. If not, then I'll have to get a new prescription for it, since I have no more refills. I'm thinking it's the end of taking that one.

That's about it for today. I'm feeling healthy and drinking lots of water. I'm trying to do some exercise (either walking or riding my bike) several days a week after work, though it's not as easy as it was when I wasn't working.

See you next time!

Couple of Quick Updates

2007-06-29T15:30:00.000-05:00

Hey everyone!

It's been over a week, and it seems I have had nothing to say.

Our church had Vacation Bible School this week, and Jenny and I participated by being "park security." We had the event at a local water park. The only problem was the torrential downpour that occurred on Tuesday and Wednesday, which reduced us to two days of VBS instead of four. But, I think the program was a success overall.

In kidney news, I think all is going well. I am trying to keep myself well-hydrated. I stopped taking Nexium this week, and I do not think there have been any negative side effects. That will save me several dollars a month, so I am glad to be off another medication. I think the next medication I get to cut out is the Bactrim, but I won't know until after my next clinic visit in the middle of July.

Speaking of clinic visits, I still need to schedule another Glofil test. This will be my "six months post-transplant" workup, so it should be a good one. I am going to try and set that for the same day as my clinic, so I don't have to go down to the office twice.

I also need to remember to call my cardiologist next month and see if they have any other options for lowering my triglycerides other than the "tricor" that they wanted to put me on. The nephrologist said no because it could raise creatinine. I guess I'll have to make that call next week, too.

That's about it for today. Nothing much, but I am still doing well, so that's always good news! Enjoy your weekend.

Clinic and Cardiology Updates

2007-06-20T12:47:00.000-05:00

Welcome to Wednesday! It's been a little over a week since I have sent out an update, so I figured I had let enough time elapse. I have a couple things to cover, so the post won't just be fluff.

I had a cardiologist check-up last week. The doctor said that I seemed fine and that she wanted some blood work (to check my cholesterol) and to get an echo of my heart to check on my mitral valve prolapse.

I had the echo cardiogram done on Monday afternoon. The technician was not able to tell me anything (of course). The doctor called on Tuesday to let me know that my prolapse looked about the same as it had six months ago, and I will need to get another echo in six more months. That was what I had hoped for, since it had gotten worse between the last two echoes I had had done. But there was not change on the latest echo (Monday) so I am in good shape for another six months. That means no valve replacement surgery for me (yet).

I also had my post-transplant follow-up clinic appointment on Tuesday (yesterday). My creatinine is still at 1.0, which is great!! The other numbers in my lab report all looked about normal, so that's good news, too. In fact, the doctor said that I was doing so well that I do not have to come back for a whole month! That's wonderful, since it means less time out of work to go to the doctor to hear that I am doing well. I'm also glad that the new kidney is working well enough to keep me out of the hospital or out of the doctor's office.

Coming up next will be another Glofil and another bone density scan. Those are both scheduled at the six-month after transplant mark. So, come July 11, I will need to get that on the books. I guess I should go ahead and schedule the Glofil soon, since I already have a doctor's visit set up for July. That will keep me from having to go down there twice.

That's it for today! Stay tuned next time for more fun kidney information (or not fun, I guess it depends on what you enjoy).

Sermon Notes - Perseverance

2007-06-11T09:22:00.000-05:00

Good morning blog readers! I come to you today with some notes from the message that I heard in church yesterday morning. Normally, I attempt to regale you with stories mainly concerning my kidneys (or adventures surrounding said kidneys). Today, I thought I'd provide you with a little insight that I gained at church yesterday and how it relates to my kidney journey.

We have been studying 2 Peter 1:5-8 in church for the past several weeks. Here are the verses, as taken from http://www.biblegateway.com/:

5) For this very reason, make every effort to add to your faith goodness; and to goodness, knowledge;
6) and to knowledge, self-control; and to self-control, perseverance; and to perseverance, godliness;
7) and to godliness, brotherly kindness; and to brotherly kindness, love.
8) For if you possess these qualities in increasing measure, they will keep you from being ineffective and unproductive in your knowledge of our Lord Jesus Christ.

As you may have guessed from today's blog title, Sunday's sermon was on the phrase "and to self-control, perseverance." The pastor spoke about how perseverance, in this passage, is not referring to just "hanging in there" but more "to remain under," like a pack mule under a load. He spoke about how persevering is not just staying under a burden, but looking forward to the results that will come about because of the burden being borne. His focus was on the Christian life, and how the trials and tribulations that we face are all worth it because, as Christians, we have the prize of an eternity in Heaven with Jesus waiting for us.

In my mind, I thought about my kidney disease. I have always looked at it as being a part of my life. It is not something that was caused by something I did, and it was not something that I necessarily deserved. I was born with a genetic condition that would cause my kidneys to fail, and they did indeed fail. But, life was not over. I knew that I could look forward to a life with a transplant. All during dialysis, I knew there were lots of people all over the world praying that God would provide a way for me to no longer be on dialysis. Back in January, God provided a kidney for me. All that I had gone through led me to this transplant.

What is my application for this? Do I just go back to life as normal? No! I keep in mind the way that life was on dialysis. I also am reminded of the family that lost a loved one and chose to donate his organs. This gives me a couple of great reasons to care for my kidney like never before. I try to drink water all day long, to keep myself hydrated and to keep the kidney happy. I take all of my medications on time every time (except that once) in order to help prevent rejection. I am trying to stay healthy with my diet and a little exercise to keep my body in good shape so I don't lose the kidney through another problem.

So, all in all, I am thankful that God allows us to learn perseverance. It lets you learn to direct your focus on the good things that are to come. And, if you achieve the positive results at the end, then you are able to look back and thank God for all He has done. At least, in this case, that's how it worked out for me.

Praise the Lord!

Oops!

2007-06-04T09:03:00.000-05:00

Well, it has finally happened. I received my transplant on January 11, 2007. In one week, it will have been five months. Every day, I am supposed to take several medications. Right now, I am taking medicine at 9am and 9pm.

In the mornings, I am now taking: Bactrim, Calcium+D, Myfortic, Nexium, Prednisone, and Prograf. In the evenings, I am taking: Atenolol, Calcium+D, Cerefolin, Folic Acid, Lovastatin, Myfortic, Prograf, and Zyrtec.

Now, we are coming to the oops. Last night (Sunday), it seems that I forgot to take my 9pm medications. Jenny and I were watching a movie, and I remembered to take my blood pressure and temperature like I am supposed. But, it seems that I forgot to actually take my medicine. I didn't notice until this morning when I grabbed my medicine for this morning. So, I didn't quite make it five months of being a perfect transplant recipient.

But, I did take my medicine this morning (just ten minutes ago, in fact). I think that forgetting my medicine once will help me to remember better from now on (or at least for the next five months).

In other news, the wedding I attended this weekend was very nice. My friend was married, and I enjoyed being his best man. I was surprised to hear the minister (also a friend) tell the story of how Josh had offered to donate his kidney to a close friend. He brought up how this showed his friendship and willingness to serve others. The minister mentioned that it was a good quality to see in a potential groom. And, the bride liked it, too! So, even though his kidney was not a match for me, I was glad to hear that it was a good experience for the two of them.

Here is a picture from the wedding. I didn't ask the couple if I could post it, but ... oh well.
In the picture are the minister, the groom, and me (in a tux)!

Enjoy your day -- see you next time.

More on the Dryer Vent

2007-06-01T07:35:00.000-05:00

Wow. I never realized that so many people had helpful hints on cleaning out the dryer vent. If I had any idea, I would have been more specific in my problem.

Let me start out with a very simple drawing. Below you can see "sort of" what the house looks like.

As you can see, the GREEN square that I have drawn represents where the dryer is located. Because of the way the house is situated, the dryer is NOT on an outside wall. Therefor, the exhaust vent for the dryer goes straight up and out on to the roof (I would guess around 20 feet high).

My first cleaning exercise was to pop the rain cover off of the roof side of the vent and empty it of all the lint. That single exercise decreased the drying time by half. It still takes a bit longer to dry the clothes than it did at the apartment, so I still have some more cleaning to do. I attempted to put a brush down the vent (from the roof) but was not able to reach very deep. I may have to try to attach the brush to a mop handle or something similar to get a longer stretch of the pipe.

I have made sure that all of the area that I can reach is clean. I've seen some gadgets to clean out the vent that are kind of like a plumber's snake, and I may try that. I may also borrow a leaf blower and try to blast all of the lint out by force. We'll have to see.

Now, you didn't think I would post and not mention anything about kidneys, did you? For me, everything seems to be going well. I am feeling healthy, and I think all of my medications are at a good level. I have not been having too many GI issues, now that I have been taking the Myfortic for a few weeks. I think I mentioned on Tuesday that the doctor did not need to see me for the next three weeks, so that is great news.

I had someone ask about my Glofil score (it was slightly lower than my first one). The doctors mentioned that they don't have "established" results for transplant patients. I guess they only have a baseline for people with two original kidneys. But, I was told (if I remember correctly) that a good Glofil score for a kidney transplant patient was anything above 70. So, even though my score went down (a little) it is not a concern, since it is still above the 70 mark. If it goes down again in three months (the next time I have a test) then I will ask the doctor about it.

In other news ... one of the bloggers that I read on a regular basis (thank you RSS) is about to get a kidney transplant! It's always great to hear about someone changing treatment methods (going from dialysis to transplant). You can read her blog here: http://mykidney.com/blog/

That's about it for today. Enjoy your weekend. I know I will. My friend Josh is getting married, and I'm in the wedding. It should be fun!

Another Quick Update

2007-05-30T07:31:00.000-05:00

I thought of some more things to say after I posted yesterday. So, I decided to go with a "bonus supplemental post" for today.

First of all, I want to say that I have enjoyed being back at work for the past month. The only problem is that everyone here is attempting to kill me. I work in a cubicle, surrounded by cubicles. The loudest sound I hear is coughing all around me. Don't these people know that I have a suppressed immune system? I am easily susceptible to all sorts of diseases. So, despite my enjoyment of work, I have to try and avoid contact with anyone that is in my area. That way, I can stay healthy. It has worked, so far. We shall see how long that lasts.

The other news I have is good news. After I had my blood drawn at the clinic yesterday, I went back to sit in the waiting area to have my name called to see the doctor. While I was sitting there, I saw a familiar face heading to check out. One of the women that was on dialysis at the clinic while I was on dialysis was leaving. I went an talked to her, and it seems that she had just received a kidney and pancreas transplant. She is blind (or mostly blind) and her son was with her. I recognized the two of them leaving. I was glad to hear that she had gotten a transplant and was doing well. I believe she said she got transplanted about a month ago.

So, good news for the lady from dialysis, and bad news for me if everyone at work keeps being sick. Maybe once all the rain slows down they will start feeling better. I haven't gotten sick yet, and that's good.

See you all next time.

Glofil Results and More

2007-05-29T13:26:00.000-05:00

Welcome everyone! I realize that is has been two weeks since my last posting, and I apologize. Not much has been going on, medically, so I haven't had too much to say.

I went to the clinic today for my standard follow-up appointment. I opted for the Tuesday appointments, since Monday was so terribly busy the last time I went. I left work at 10:00 to be at the clinic by 10:40, and was back at work by 12:00, so that's not too bad. I think I'll stick with Tuesdays for a while.

I got back my Glofil results from my last visit. My Glofil is 82. You may remember last time that my Glofil was 86.1. The doctor said that 82 is wonderful and that I have nothing to worry about. I just need to keep drinking my water and taking my medications.

I told the doctor that I felt like I had been sweating more since my transplant. He said that many patients complain of the same thing and of oily skin. He said that if it gets to be a real problem, I will have to talk to a dermatologist. I don't feel like it is a problem, yet, it was just different than before my transplant.

I also got back my lab results for today. My creatinine is at 1.0, which is wonderful. My cholesterol is a little higher than it was last time, but still within the normal range. The only number that was out of range was sodium, and it was just a little low (132.8 with the range being 136 - 144). Aside from that, all of my numbers look like they have been. Magnesium continues to be slightly low, but it is not causing any concern.

In non-kidney related news, Jenny and I have officially moved in to our new house. (Well, new to us). We spent the three-day weekend (and the entire week before) unboxing and sorting things where we want them to go. All I have to do now is to figure out how to clean out the dryer's external exhaust vent so that the dryer will work better. We just installed door stops to keep from punching doorknob shaped holes into all the walls. It's going to be a lot of work, but I am glad to get in to a new place.

See you next time. Hopefully it will be sooner than the 3 weeks away for my next appointment. That's right, the doctor said I don't have to come back for 3 weeks! Yippie!

Clinic Visit from Monday

2007-05-15T08:24:00.000-05:00

Hi Everybody! (Hi, Dr. Nick)

I had another follow-up appointment yesterday (I am now seeing the doctors every two weeks, which is nice). They scheduled my 3-month Glofil test on the same day, so I was in the office about three hours or so.

The Glofil test was nice and easy. I think that I must be keeping myself fairly well-hydrated on a regular basis. I did not drink much more than normal during the weekend. When I arrived at my test, I was told to drink 5 glasses (about 200ml each) to start. Then, the second round was 1 glass, and I drank 2 glasses for the third and four rounds. I feel like I was better off than the guy that had to drink 3 to 5 glasses each time. I took the test in the morning, and the lab guy was not available after my doctor's visit, so I probably will not find out my results until the 29th, when I return to the doctor's office for my next clinic visit.

In other news, my creatinine was down 0.9 (from 1.0 last time). It is always good to see my creatinine down, and I am pleased any time it is below 1.0 (which is very good). This means that my new kidney is functioning well after about four months of living in my body.

They drew my cholesterol and everything looked good. I think I will be able to stay on the Lovastatin instead of the Lipitor (saving a bunch of money every month).

I think that the Myfortic is much more gentle on my system than was the Cellcept. I can't tell for sure, since I am taking an antibiotic for some "other" GI issues. I will stay on two Myfortic per day for the next two weeks and see. If I'm doing okay, maybe I'll ask the doctor to raise me to three per day.

I am almost done taking the antibiotics from the GI doctor. I don't know if they are working or not. I guess they will have to do another study to find out. Luckily, I won't have to take any more after Wednesday. I do not like the taste, and I do not think my intestines enjoy them, either.

I think that's it from a health standpoint. We got the carpet and tiles in the new house cleaned by Dalworth, and they did a great job (I was there when they finished up, and it looks very nice). They told us how to seal the grout and how to Scotch-Guard the carpet to help protect both, and we will probably try and do that this week before the furniture arrives. Dalworth also came out (different crew) to clean all of the air vents, ducts, and returns. They even fixed the slight rattle that our air conditioner was having. It seems the compressor was slightly unstable. I am hoping that that lack of dust and dirt will be nice on my allergies for at least a couple of months until our dust fills up the house. Oh, and Dalworth sent me a coupon code which is good for six months, so if you are having some services done, let me know, and I'll forward you the code.

That's about it. My health is wonderful, and the house is nice and clean. I do not plan to do do too much moving, to keep myself safe and healthy. I had some pain in my old kidney after we boxed up some of our stuff, so I am trying to keep my stress levels down.

If I hear from the Dallas Transplant Institute before the 29th, then I will let you know what my Glofil score was. If you remember from last time, my Glofil was 86.1. I am hoping that it will be that good or better this time.

See you later!!

Post-Transplant Glofil Test #2 - MONDAY

2007-05-11T13:47:00.000-05:00

Hello everyone!

On Monday, I have to take my second post-transplant Glofil test. For those of you unfamiliar with the test, I wrote about it previously here: http://nmccart.blogspot.com/2007/02/upcoming-first-post-transplant-glofil.html

I am going to be drinking a lot of water this weekend. It should be a lot of fun. I will also have my regular clinic (blood work) and doctor's follow-up on Monday, so I should see how my medicine is doing.

In other news, we have closed on our house, and we now have a set of keys. We still have some things to take care of before we move in, like getting the carpet cleaned, but I think we are ready. It will be a big adventure!

I'll let everyone know how Monday's stuff goes later next week. Until then, enjoy your weekend.

New Medications

2007-05-03T14:49:00.000-05:00

Well, it seems that I have to take a couple of new medications. The nurse from my GI doctor called yesterday afternoon to give me the results from my colonoscopy/EGD.

She said that the biopsies did not return any results (which is good). Then she said that the stool samples returned an infection. The doctor prescribed an antibiotic and a pro-biotic to take for the next two weeks. The antibiotic is to be taken every eight hours, and the pro-biotic is to be taken once a day.

So, hopefully, this medication will fix any problems that I have been having. I'm guessing that I will feel healthier, but I have no idea. I'll see in a couple of weeks.

In other news, we had storms here last night that knocked out the electricity. It was out from about 7:30pm - 2:00am. It wasn't a problem, since most of the night we were asleep. Luckily, the power came back on and the alarm clock worked this morning.

Have a great day!

Monday's Clinic Appointment

2007-05-01T13:21:00.000-05:00

I went to the clinic yesterday. My appointment was at 10:40, so I left work at 10:00. It seems that Monday is not the best day to go in. I did not get back to work until about 1:00. I think for any future follow-up appointments, I will stick with Tuesday or Thursday. I guess all the new patients go in on Mondays, so they get pretty backed up.

My blood work all looked very good. My creatinine is still at 1.0. My magnesium is up from 1.6 to 1.7. The doctor said my sodium bicarbonate level was up (closer to normal) so the doctor said that I only need to take one tablet per day instead of two.

I also switched from taking two 250mg Cellcept tablets per day to taking two 360mg Myfortic tablets per day. I want to have the higher dosage of protection from the anti-rejection medication. I tried it before, but for only about 4 days (and taking three tablets per day). This time, I am going to go with two tablets per day and try it for two weeks. That should give my body (and digestive system) time to adjust to the new medication and see if I still have problems at the end of that time.

The only other medication change was from Lipitor to Lovastatin for my cholesterol medication. The Lovastatin is available at a significant discount from Wal-Mart, so I am trying to save money. I asked the doctor to schedule a cholesterol test for my next appointment so that I can see if the new medication is working correctly. I will probably have them test it again two weeks later just to make sure.

The other suggestion the doctor made for my GI issues was to stop the Nexium. I told her that I'd like to try the Myfortic first, and if there is no change, then to try stopping the Nexium. Any time I can take less medicine, I am happy. Speaking of which, I think I will stop taking my Lunesta this weekend. I am on 10mg of Prednisone now, and that should be the lowest dosage for at least a year. The doctor said I could stop the Lunesta whenever I felt comfortable, so I think I'll try that this weekend.

The doctor also scheduled me for a second Glofil test for May 14. I know that is a Monday, but since it is a Glofil procedure, I have to be there half the day anyway. So, I will be drinking a ton of water that weekend in preparation.

That weekend is also when we will be closing on our new house! We have all the plans in the works, and just need to sign the paperwork on the 9th to be completed. It is very exciting to be moving into a new house. I just set up the carpet and vent cleaning today, to help get rid of some of the mold and dust in the house. Maybe that will be good for my allergies.

Well, I think that's it for this week. Thanks for all your prayers. Enjoy your week!!

Test Results

2007-04-24T15:36:00.000-05:00

I received my test results from the colonoscopy and EGD yesterday. There are nine pictures of what looks like it could be the inside of anyone's GI area. There is nothing of note in any of the pictures (and, I don't have a scanner, so I can't scan them to show them off).

Here are the remainder of the results (the text portion):

We performed a colonoscopy and an EGD today based on the following indications:

Diarrhea, functional (C)

During the procedure we found the following:

No duodenitis, ulcers, masses, or polyps seen. Duodenal aspirate was sent for analysis for infectious organisms. (biopsy)
Erythema and nodularity in the antrum and stomach body compatible with gastrits
The upper third, middle third, and lower third of the esophagus was normal. The EG junction was normal. No esophagitis, cancer, ulcers, varicose veins, or Barrett's esophagus seen.
The terminal ileum was normal without any ulcerations, stricture, inflammation, masses, or polyps. (biopsy)
Mucosa throughout the colon is normal. No masses, no polyps, no colitis, and no ulcers were noted. Vascular pattern is normal. Haustral folds are normal. Stool was sent for analysis for infectious organisms. (biopsy)

Our recommendations are as follows:

Await biopsy results.
I suspect the diarrhea is medication related.

The rest of the sheet is instructions to follow once I get home (which was yesterday).

So, now you see that I am perfectly normal (as far as they can tell from the inside). My colon and esophagus are just like they should be, and my problems might be caused by the Cellcept.

So, that's all I know. Oh, that and I have to have a release from the transplant doctor before I can see the dentist. I didn't know that earlier, but I do now. I'll talk to the doctor on Monday and see if I can get a release to get my teeth cleaned (was supposed to do it in January, but got a transplant instead).

Have a great day!

Interesting

2007-04-20T15:25:00.000-05:00

So, Wednesday, I got a call from 480-423-2335. Now, I don't live in Arizona, so I didn't know who could be calling me. I answered the phone, and it was a recording stating that my doctor's office had an important message for me, and that I needed to call a 1-800 number to retrieve it.

I called the 1-800 number, put in my account number, and the system played a recording for me from LabCorp. The LabCorp people had left me a message to say that the results of my stool study were normal. They did not find any infections or any other problems.

I was glad to hear that I was OK, but I found the experience strange. I do not know why the doctor's office did not just call me with the information directly. They obviously have my phone number, since they called to tell me I have a message. I could have given them my account number over the phone to a person just as easily as to the machine in Arizona. All in all, it was a strange ordeal.

So, there was nothing else new this week. I have my colonoscopy and endoscopy scheduled for Monday. I will be doing my preparation all day Sunday, which should be fun. I got the solution from the pharmacy, and it should not be a problem. The only thing left to do is to buy some Gatorade to drink since all I can have on Sunday is fluids. We have some store-brand flavored gelatin and have to make it on Saturday.

So, hopefully the tests will go well on Monday. Jenny is not working that day so that she can give me a ride home. They don't want you to drive after being "put under" for a couple of hours. I guess the drugs make you a bit "woozy".

That's all for this week. Enjoy!!

Friday Update - April 13

2007-04-13T15:12:00.000-05:00

Today is Friday, April 13, 2007. I had another clinical follow-up appointment (post transplant) today, and I thought I'd share how everything went.

First of all, I saw the "real" doctor today! The clinic is staffed by several physicians and physicians assistants. The team is headed up by a single doctor who reviews all of the work done for all of the patients each day (with his team). It seems, after my visit today, that he also sees patients himself. Today, instead of seeing an assistant, I got to see the head doctor, and that's always fun.

I told the doctor about the pain I was having in my side over the kidney incision. He said that if it did not get worse or if it continued for several days, then I should worry about it. He said that it just hurting for one day was not a problem. It could have been strained exercising or something like that, and I should not worry about it.

He got my lab results, and my creatinine is still 1.0! That means that drinking all of the extra water is helping, and my medication seem to be working. None of my other numbers seemed out of whack. The "liver numbers" all looked good, and my white blood cell count was still normal (which is nice to hear). The only blemishes I saw on the report were low sodium (never a real problem) and low magnesium (which has been slightly low since transplant). The doctor was not worried about either number. Sodium is especially easy to fix, and might have been low just because of the amount of water I've been drinking.

So, I'm healthy and happy. I got a note from the doctor saying that I could return to work full-time starting on Monday, April 30. And, I scheduled my next doctor's appointment for that day, too, so I can see how everything goes with timing my appointments with working and not using up all of my sick time. I scheduled the next appointment around lunch time hoping to use my hour up for that (we shall see).

The only other thing coming up is the colonoscopy and the endoscopy, which are set for April 23. Nothing for me to do for those until the 22nd, so no worries. Thank you all for the prayers as I continue to recover. Stay tuned next time for more exciting news from the kidney world!

Some Pain Today

2007-04-12T13:24:00.000-05:00

Hi everyone. Thanks for reading the blog today. I just wanted to make a quick update for today.

This morning, I noticed that I have some minor pain over my transplant site. I noticed it after exercising this morning. I have been riding the exercise bike for the past several days instead of walking on the treadmill because my foot has been hurting a little bit. I think I slightly injured my foot a bit walking on it funny. But, I have been riding the exercise bike recently, and my foot is feeling much better.

Unfortunately, I also noticed some pain over my kidney transplant today as well. I am not too worried since the pain is minor, but I do plan to tell the doctor tomorrow when I go in for my clinic visit. Since I have a standard follow-up tomorrow, I am not going to worry about calling the doctor today. The pain is minor, so I am not worried.

I would like to have everyone pray for me, though. I would ask that you pray that the pain that I am feeling is not a problem and that the doctors will not be worried. I am glad that I have frequent appointments for just this reason.

And, I have my colonoscopy and endoscopy scheduled for April 23. I was reading the instructions for the preparation today, and I don't think I will be going to church on the 22nd. The preparation is fairly intensive, and is supposed to start at 7:00 am and go for six or eight hours. So, from the sounds of the prep sheet, I will need to stay at home all day. I think the worst part is that I am only allowed to drink (no food) for that Saturday and Sunday. Hopefully, the tests on the 23rd will not show any problems.

Thanks for coming by to read today!

Friday Updates

2007-04-06T17:25:00.000-05:00

Welcome to Good Friday everyone. For me, I suppose it was a pretty good Friday. I had a lab appointment today, and I saw my GI doctor as well. My creatinine was at 1.0 today, which is a good sign. I think that I have been drinking enough water, which is good for me. I think that has been the most help at keeping my labs stable.

I saw the doctor at the clinic today. They said that they want me to reduce my Cellcept down to 250mg twice a day (instead of 3 times a day) to help reduce diarrhea. They also called this afternoon to have me increase my Prograf from 2.5 mg twice a day to 3.5 mg twice a day. I guess my Prograf numbers were really low, because they asked if I had skipped a dose (which I had not). So, I will take more of that for at least a week (until they draw labs next Friday). Then, we will see if the numbers are better balanced (hopefully).

I saw the GI doctor today as well. She said that she wants to check for any intestinal infections that might be hiding inside. Since I have a reduced immune system, I am at a greater risk of getting infections (even smaller ones that would not hurt most people). So, the doctor wants to do an endoscopy and a colonoscopy on April 23. She decided to do both procedures at the same time, since I would already be knocked out. She said she will take a look around, and possible take some biopsies if there is not anything to see.

Please pray that I will stay well. Pray that God will continue to watch over me and will help me stay healthy. I am still drinking lots of water, and I will keep doing so. It gets easier to drink more as you get used to drinking more water. Thank you all for coming by to read today.

PS - Jenny really wanted me to update the blog just now, so you can thank her that it got done today rather than tomorrow.

I Have a Big Head - And Little Arms!

2007-03-30T15:35:00.000-05:00

I realize that the subject line does not pertain to today's post, but it is funny. If you have seen the commercial that I am thinking of, then you might laugh at that line, too.

I visited the doctor today for another post-transplant appointment. I saw someone new at the clinic, which is okay. They have a large staff at the clinic, and they see you as quickly as possible (which is nice). Today, it was a standard follow-up appointment, just to see how I was doing.

My creatinine was down to 1.0 (which is good news). I guess it was just a problem with dehydration that was causing my creatinine to go up a little bit. I will just continue to drink more water and keep myself hydrated. My cholesterol was 142, which the doctor said was good. She said that all of my lab number looked well, which is always good news. I prefer to hear good news from the doctors rather than bad news.

She had me increase my dosage of Cellcept from 250mg twice a day to 250mg three times per day. The Cellcept is an immuno-suppressant that helps me keep my new kidney. She also said that I no longer have to take my Mycelex (which is the anti-thrush medication). It seems that you only really need to take it for the first month after transplant. She said to hang on to it in case I had a problem, but that it was not likely. She also said that I can stop taking my Valcyte (anti-viral) once this month's supply runs out.

That should be about it. I started taking sodium bicarbonate this week, and it seems to be doing the trick. My CO2 levels were back to normal, and I have been having less heart burn than I did last week.

So, I think everything is going great. The doctor will probably keep increasing my Cellcept to as high as my body can stand it. That should give me the best chance of not rejecting my kidney. Hopefully, if we increase slowly, my body will get used to the medication and not be as uncomfortable.

That's about it for this week. The house inspector did not find too many problems (nothing major). We just have to get some pricing on the minor repairs that we decided needed to be done before we move in. I don't know exactly how much effort it will be, but we will see. Hopefully, the house will be ours in May (on our closing date).

Thanks for reading!

Friday Lab Update

2007-03-23T15:56:00.000-05:00

Once again, we have come to Friday. I am here to give you my update from the visit with the doctor today.

I went in this morning to the clinic to have my blood drawn so I could see if I am healthy again. The doctor said that my creatinine was at 1.2 (which is still a little bit high). She said she would rather see me at 1.1 or below. The solution: drink more water! I told her that I had been drinking at least 80 ounces of water (plus other beverages on top of that) per day for the past week. She said to keep that up, and it should help. It seems I was still showing as slightly dehydrated (though, I do not know how).

Either way, I am doing fine. The doctor prescribed me some new medication (but I don't recall the name off hand, they didn't have any at the pharmacy today). I should be able to get it on Monday, as long as they get it in stock.

I did not get any order to change my Cellcept dosage. So, for now, I will continue to take 250mg twice a day. I may have to call back on Monday to see if they wanted to increase that or leave it alone. I guess that depends on if I think about it on Monday or not. I have to go visit with the house inspector Monday afternoon, so I may be too busy to call the clinic then. Perhaps Tuesday.

So, all is well with me. I will continue to drown my insides with water (and other beverages, to keep up my salt levels and such). I will keep going to the doctor (I have another appointment for Friday), and I will continue to take my medication (including the new one, after I get it).

So, keep praying that my body will continue to accept the new kidney and that I will stay healthy and happy. Oh, and pray that our house inspection goes well. We are looking to buy, and would not like our prospective home to turn out to be a trash pile.

Thanks!

Monday - How I am Doing

2007-03-19T16:44:00.000-05:00

Welcome back to the blog everyone. I am proud to say that I am (according to the doctor) doing much better today than I was on Thursday of last week. Now, I say that because I have not felt any worse since I had my transplant in January. I have been feeling great, and I continue to feel wonderful as time goes on.

The problem I was having was with my creatinine. It had shot up from 1.1 to 1.4 (which is bad). The doctor was worried that I might be getting dehydrated. So, we stopped one of my immuno-suppressants (the Cellcept) for the weekend to see if that would help. My creatinine went down, so my body is obviously not a big fan of the Cellcept. The doctor prescribed me a lower dosage pill (250mg instead of 500mg) and wants me to start taking two per day on Thursday.

I originally was taking 4 (500mg) Cellcept per day, after my transplant. The doctor quickly switched me to 3 per day after he realized that four per day was making me sick. The new doctor wants to try to ease me back on the the Cellcept, and said I need to make sure to drink at least two liters of water per day with it. So, I will attempt to be better with my water drinking, and hopefully, I will see better results when I go back to see the doctor on Friday!

So, my creatinine was 1.1 today (which is better). The rest of my lab results seemed unremarkable, so I will not bother you with them. Needless to say, I think that all is well and that I will try to enjoy the lower dosage of my medication on Thursday.

I'll talk to you all again on Friday, after I have another doctor's visit.

Friday Update on My Kidney

2007-03-16T15:15:00.000-05:00

As you may have guessed, I visited the transplant clinic again today (after hearing that my creatinine on Thursday was up to 1.4). I arrived at 8:30 this morning for my 9:00 blood work, and didn't get out of the office until nearly 11:00. I guess it was a little bit tougher to get squeezed in to an appointment that it is to schedule in advance. That will teach me to have messed up numbers. I'll have to fix that for next time.

My creatinine today was down to 1.3 (which is a little better). The doctor asked if I was still having problem with diarrhea, which I was. The Cellcept (or Myfortic) can cause that side effect in patients. The doctor originally had me down to three Cellcept per day instead of four, and that helped quite a bit. The new doctor switched me to the Myfortic to lessen these side effects, but it does not seem to have helped that much.

The doctor sent me home today with the following instructions:

Stop taking Myfortic/Cellcept for the weekend
No dairy products
Take Immodium as needed
Do stool cultures and bring back on Monday
Make a future appointment with GI doctor

So, lots of fun for the weekend. Don't ask me any questions about #4, because I probably will not answer them. It's not a subject with which I am overly comfortable, so no poop questions!

Anyway, I will be returning to the doctor on Monday, and hopefully we can work out this latest problem. In the meantime, I will be drinking plenty of fluids in a hope to not be dehydrated. That is the biggest risk at the moment. Being dehydrated is a problem for the new kidney, so I don't want to cause any problems. I guess I'll just drink a bunch more fluid and hope for the best.

I should know more on Monday (or maybe not). I guess it depends on if the doctor can evaluate my samples immediately or if it will take a few hours. If I learn anything (like if I have a virus or something) then I'll let you know. Otherwise, you'll hear from me again when I learn something!

Have a good day!

(Oh, and enjoy my birthday on Sunday. I'll be 29.)

Thursday - Not so Good Today

2007-03-15T16:42:00.000-05:00

I just got a call from the Dallas Transplant Institute. They said that my creatinine is up to 1.4 (which is bad). The lady said that I need to come in the the office tomorrow to find out what is wrong. She advised that I make sure that I am well-hydrated for the rest of the day.

They just ran lab work this morning, so I do not know if there is anything else wrong. I will be seeing the doctor tomorrow morning (Friday). I guess he will let me know what to do to get my creatinine back down to normal.

Please pray that my creatinine will go lower and that there will not be anything wrong with me. Thanks!

Lab Update from Monday and Thursday

2007-03-08T17:09:00.000-06:00

Greetings blog readers! With today comes another chapter in the ever-so-interesting world of Nathan's Lab Reports (patent pending). If you remember our last conversation, I had a slightly higher creatinine than I had in the past, so the doctor had my blood drawn both Monday and Thursday to see if there was a problem.

The blood draw last Thursday, this Monday, and this Thursday all showed that my creatinine was up to 1.1. The PA that I saw this week said that I should not worry. I have gained about ten pounds since I was in the hospital to get my transplant, and higher mass can cause higher creatinine. She said not to worry about it, and that it was not a problem.

She also congratulated me again on my high number from the Glofil test. She said I should be very pleased with my new kidney and at how well it was functioning. She also said that she didn't see any other problems with my other labs.

I am going to try and list the full lab results for Monday and Thursday below. It might not fit on everyone's screen, and I apologize. Just change your resolution to 1024x768 or higher today to view the report, and then you can switch back to whatever you were using before.

Enjoy.

PROCEDURE	03/05/07	03/08/07	UNIT	REF RANGE
[Profile: CMP]
Creatinine	1.1 H	1.1 H	mg/dL	0.4 - 1.0
Blood Urea Nitrogen	11.0	12.0	mg/dL	8.0 - 20.0
Sodium	139.8	140.0	mmol/L	136.0 - 144.0
Potassium	3.5 L	3.3 L	mmol/L	3.6 - 5.1
Chloride	108.0	107.2	mmol/L	101.0 - 111.0
CO2	25.7	26.1	mmol/L	22.0 - 32.0
Glucose	115	105	mg/dL	74 - 118
Calcium	9.5	9.6	mg/dL	8.9 - 10.3
AST	-	24.0	U/L	15.0 - 41.0
ALT	-	48.0	U/L	17.0 - 63.0
Alkaline Phos	-	68.0	U/L	38.0 - 126.0
Albumin	4.4	4.6	g/dL	3.5 - 4.8
Total Protein	-	6.5	g/dL	6.1 - 7.9
Total Bilirubin	-	0.7	mg/dL	0.4 - 2.0
[Profile: GCT]
GCT	-	59.0 H	U/L	7.0 - 50.0
[Profile: MAGNESIUM]
Magnesium	-	1.7 L	mg/dL	1.8 - 2.5
[Profile: PHOSPHORUS]
Phosphorus	3.1	3.5	mg/dL	2.4 - 4.7
[Profile: CBC]
WBC	8.4	7.9	K/uL	4.0 - 11.0
RBC	4.46	4.51	M/uL	3.8 - 6.2
Hgb	15	15.1	g/dL	11.5 - 18.0
Hct	42.7	43.2	%	35.0 - 54.0
MCV	95.8	96.0	fl	80.0 - 100.0
MCH	33.7	33.5	pg	27.0 - 34.0
MCHC	35.2	34.9	g/dL	31.0 - 36.0
RDW	12.4	12.5	%	11.5 - 14.5
Platelets	223	214	K/uL	150 - 450
# Neut	5.33	4.77		1.40 - 6.50
% Neut	63.60	60.10	%	42.20 - 75.20
# Lymph	2.59	2.38		1.20 - 3.40
% Lymph	30.90	29.90	%	20.50 - 51.50
# Mono	0.32	0.53 H		0.10 - 0.50
% Mono	3.84	6.65	%	1.70 - 9.30
# Eos	0.04	0.08		0.00 – 0.70
% Eos	0.51	0.95	%	0.00 – 7.00
# Baso	0.1	0.19		-0.00 – 0.20
% Baso	1.24	2.41	%	0-0.00 – 2.50

Creatinine Still at 1.1

2007-03-06T17:38:00.000-06:00

When I saw the doctor on Thursday, my creatinine was at 1.1. This was higher than the 0.9 or 1.0 that it had been since my transplant. So, the doctor advised that I go to the clinic on Monday (yesterday) to have my blood drawn again to make sure that I was okay.

I got a call from the clinic this morning. They told me that my creatinine was still at 1.1. This is not an "abnormal" number, it is just higher than I had been, so the doctor wants to watch it. I will go back to the clinic for another appointment on Thursday, so hopefully, the doctor will let me know what to do about this.

The creatinine is a reflection of how well your kidney is functioning. Basically, the higher the number, the worse the function. So, 0.9 is much better than 1.1. I will just have to wait until Thursday to see if I need to do something or make any changes.

I will let you know what I learn after my appointment! Enjoy your day.

Post-Transplant Clinic: March 01

2007-03-01T15:05:00.000-06:00

I visited the clinic this morning as a part of my post-transplant follow-up appointments. The doctors have been seeing me every week since the end of January.

The important thing to note from today was that my creatinine was up to 1.1 (it had been at 1.0 for several weeks, and was actually down to 0.9 last week). The doctor said that, because it went up, she wants me to come in for blood work on Monday, and a follow-up on Thursday of next week. So, I will not be going to twice-a-month appointments quite yet. We want to make sure that everything is okay before we start reducing appointments.

The doctor said that changes in the creatinine can be caused by the Prograf. She said that if there is too much Prograf in your system, it can make the creatinine start to rise. She also said it could account my my GCT not going down as fast as some other people. If you remember from last week, the GCT is a liver enzyme that normally is up after surgery, but should fall back in to the normal range if I am healthy.

Last time, I mentioned that my Urine Creatinine seemed low. The doctor said that was only because of the high urine output I had in my 24-hour urine. She said not to worry, and that everything is normal. She also was very pleased with my Glofil results, saying that a good number would be between 50 and 100 (and I was 86.1).

So, that's about it for today. I got an e-mail from the disability department saying that they have approved part-time disability from February 6 through February 23. That should show up on my next paycheck, so that's a good thing.

Here are my lab results from today:

PROCEDURE	RESULT	UNIT	REF RANGE
[Profile: CMP]
Creatinine	1.1	mg/dL	0.4 - 1.0
Blood Urea Nitrogen	12.0	mg/dL	8.0 - 20.0
Sodium	142.0	mmol/L	136.0 - 144.0
Potassium	4.3	mmol/L	3.6 - 5.1
Chloride	108.3	mmol/L	101.0 - 111.0
CO2	29.2	mmol/L	22.0 - 32.0
Glucose	100	mg/dL	74 - 118
Calcium	9.8	mg/dL	8.9 - 10.3
AST	23.0	U/L	15.0 - 41.0
ALT	44.0	U/L	17.0 - 63.0
Alkaline Phos	71.0	U/L	38.0 - 126.0
Albumin	4.4	g/dL	3.5 - 4.8
Total Protein	6.3	g/dL	6.1 - 7.9
Total Bilirubin	0.7	mg/dL	0.4 - 2.0
[Profile: GCT]
GCT	56.0 H	U/L	7.0 - 50.0
[Profile: MAGNESIUM]
Magnesium	1.7 L	mg/dL	1.8 - 2.5
[Profile: PHOSPHORUS]
Phosphorus	3.7	mg/dL	2.4 - 4.7
[Profile: CBC]
WBC	7.4	K/uL	4.0 - 11.0
RBC	4.39	M/uL	3.8 - 6.2
Hgb	14.8	g/dL	11.5 - 18.0
Hct	42.6	%	35.0 - 54.0
MCV	97.0	fl	80.0 - 100.0
MCH	33.7	pg	27.0 - 34.0
MCHC	34.7	g/dL	31.0 - 36.0
RDW	12.1	%	11.5 - 14.5
Platelets	244	K/uL	150 - 450
# Neut	3.96		1.40 - 6.50
% Neut	53.70	%	42.20 - 75.20
# Lymph	2.64		1.20 - 3.40
% Lymph	35.90	%	20.50 - 51.50
# Mono	0.52		0.10 - 0.50
% Mono	7.03	%	1.70 - 9.30

Thanks for reading!

End of February Update

2007-02-27T13:31:00.000-06:00

Hello everyone!

I am here to offer a quick update on how I have been doing since last Thursday. I have another clinical follow-up appointment scheduled for Thursday (in fact, I just got the automated call from the office reminding me to come in Thursday morning). I am feeling well, and looking forward to the office visit. It should be the last time I have to come for two weeks (hopefully).

I lowered my Prednisone dosage to 17mg per day starting yesterday. That's good news, since less medication is probably better for me. As I have mentioned before, the Prednisone has the most negative side effects, so it is good to take less of it. I should be down to 10mg per day starting by the end of April.

I have also continued to walk every morning. My speed is going up, though I have yet to start getting a real "work out" on the treadmill yet. If I get going too fast, I will have to start playing with the elevation, since I am not really looking to go running every morning!

Here are my last 9 days of walking results:

DATE	DISTANCE	TIME
02/19/07	2.70 mi	65 min
02/20/07	2.81 mi	65 min
02/21/07	2.89 mi	65 min
02/22/07	3.00 mi	65 min
02/23/07	3.02 mi	65 min
02/24/07	3.12 mi	65 min
02/25/07	3.13 mi	65 min
02/26/07	3.24 mi	65 min
02/27/07	3.25 mi	65 min

As you can see, I am now walking over three miles per day, which is great. My goal is still between four and five miles a day at the moment. Once I reach that, I will have to look in to increasing the treadmill's elevation to get a better work-out. But, I am personally pleased with the amount of stamina and endurance that I am building up. Hopefully, this will keep me feeling better throughout the life of my transplant.

That's about it for today. I am still working from home 20 hours per week. I am still talking to the Disability Insurance people to see about getting my part-time disability checks. I did get paid for all of my full time off (Jan 11 - Feb 4). I just have to get them to keep paying me until I get back to work full-time. I guess we'll see.

I have another appointment Thursday morning. I'll let everyone know more when I do!

Glofil Results and Lab Results

2007-02-22T17:20:00.000-06:00

Welcome to the blog everyone. I have quite a bit of news for today, so sit back and relax, it might go a little longer than I plan.

Today was my second follow-up appointment at the Dallas Clinic since my kidney transplant in January. It was also the date of my first post-transplant Glofil test. You can read all about the Glofil test here: http://nmccart.blogspot.com/2007/02/upcoming-first-post-transplant-glofil.html

I arrived at the clinic around 11:30 am. The Glofil was scheduled to start around noon, and the doctor's appointment was set for just after the Glofil finished (around 2 or 3). I did my due diligence and drank a bunch of water for the last three days. In fact, I'd say I drank about 100 ounces of water a day since Monday, not to mention other beverages with meals. So, I arrived prepared to give a urine sample! They gave me the iodine solution, took my height, weight, temperature, and blood pressure, and sat me in a room with three other post-transplant patients. Then, once everyone was there, they gave me the injection of Glofil solution.

The guy who was running the test came in a few minutes later to tell us how much to drink. Three of us had to drink five glasses of water (about 200 ml each) and the fourth guy (who was much larger than any of us) had to drink 12 glasses. We were given 45 minutes to consume our water and wait. I drank my five glasses, and I read a book until it was time to give the first urine sample.

The procedure for the next couple of hours was drink, empty bladder (and have the output measured or something), get blood drawn, and drink again. The second and third sessions I only had to drink 2 glasses of water. Each interval was about 30 or 45 minutes. They measured something in the urine (perhaps volume) and also the level of solution in the blood (to see how much was being removed by the transplanted kidney).

My Glofil was 86.1. The technician said that this is an excellent result. There is no baseline for kidney transplant patients, but donors normally need to be between 80 and 120 (I believe) to be considered eligible to donate their kidney.

After that was finished, I saw the doctor. She gave me my lab results (which you will see below). My creatinine is down to 0.9 (from 1.0 the last several weeks). My hemoglobin is 13.7 (which is down a little from 14.3 last week, but still in the good range). My triglycerides were down a little bit from last week, which is also good news. The only thing the doctor told me was to try and consume a bit more milk and meat to get my phosphorus back up to normal.

She said my "GCT" was 58.0, which was a little bit high. I looked at last week's result, which was 64.0, and noticed that it had gone down. I asked her what that number meant. She said that it was a liver enzyme. She said it was normal for it to go up after surgery, and that it is good that mine is dropping to be in the normal range. She said it should not be a problem.

My White Blood Cell count was down to 3.0, which is a bit too low. The doctor said she was not going to worry about it since it was the first time it has been low. I think that if it were to be too low for a long time, they might want to change my anti-rejection medication dosages (I'm guessing).

The results from the 24-hour urine collection were also on my lab report. Everything looks pretty good, except the Urine Creatinine. I do not know if that number being low is good or bad, so I will have to ask them next week.

So, that's about it for today. I have an appointment next Thursday morning to be checked out again. The doctor said that by the end of the month, they will probably only have me come in every two weeks. I am guessing they will want to do that 4 or 6 times, and then maybe swap me to once a month. I told her not to hurry on my account, I would rather be safe than to go back to work earlier!

Here are the lab results for February 22:

PROCEDURE	RESULT	UNIT	REF RANGE
[Profile: CMP]
Creatinine	0.9	mg/dL	0.4 - 1.0
Blood Urea Nitrogen	11.0	mg/dL	8.0 - 20.0
Sodium	130.6 L	mmol/L	136.0 - 144.0
Potassium	4.0	mmol/L	3.6 - 5.1
Chloride	100.6 L	mmol/L	101.0 - 111.0
CO2	22.9	mmol/L	22.0 - 32.0
Glucose	111	mg/dL	74 - 118
Calcium	9.3	mg/dL	8.9 - 10.3
AST	26.0	U/L	15.0 - 41.0
ALT	45.0	U/L	17.0 - 63.0
Alkaline Phos	67.0	U/L	38.0 - 126.0
Albumin	4.1	g/dL	3.5 - 4.8
Total Protein	6.1	g/dL	6.1 - 7.9
Total Bilirubin	0.8	mg/dL	0.4 - 2.0
[Profile: GCT]
GCT	58.0 H	U/L	7.0 - 50.0
[Profile: MAGNESIUM]
Magnesium	1.4 L	mg/dL	1.8 - 2.5
[Profile: PHOSPHORUS]
Phosphorus	2.3 L	mg/dL	2.4 - 4.7
[Profile: CBC]
WBC	3.0 L	K/uL	4.0 - 11.0
RBC	4.04	M/uL	3.8 - 6.2
Hgb	13.7	g/dL	11.5 - 18.0
Hct	39.0	%	35.0 - 54.0
MCV	96.6	fl	80.0 - 100.0
MCH	33.9	pg	27.0 - 34.0
MCHC	35.1	g/dL	31.0 - 36.0
RDW	12.4	%	11.5 - 14.5
Platelets	254	K/uL	150 - 450
# Neut	1.94		1.40 - 6.50
% Neut	64.40	%	42.20 - 75.20
# Lymph	0.87 L		1.20 - 3.40
% Lymph	28.90	%	20.50 - 51.50
# Mono	0.16		0.10 - 0.50
% Mono	5.29	%	1.70 - 9.30
# Eos	0.01		0.00 - 0.70
% Eos	0.25	%	0.00 - 7.00
# Baso	0.04		-0.00 - 0.20
% Baso	1.16	%	-0.00 - 2.50
[Profile: CHOLESTEROL]
Cholesterol	142.00	mg/dL	0.0 – 200.0
[Profile: TRIGLYCERIDE]
Triglycerides	212.0 H	mg/dL	0.0 – 200.0
[Profile: Creatinine Clearance 24 Hour]
Urine Volume	4690.00	mls/24hr	-
Urine Collection	1440	Minutes	-
Urine Creatinine	36.7 L	mg/dL	400.0 – 2800.0
Creatinine Clearance	132.81	mL/min	80.00 – 125.00
Urine Creatinine 24 Hrs	1.72	gm/24 hrs	1.00 – 2.00
[Profile: PROTEIN: 24hr Urine Total]
Micro Total Protein	2	mg/dL	-
MTP/24HR	93.8	mg/24hr	-

Enjoy!

Monday, Feb 19 -- An Update

2007-02-19T09:05:00.000-06:00

I see it has been about four days since I last gave everyone an update, so I am going to try and give a quick overview of everything that is going on with me at the moment.

For starters, I am feeling great! My energy level is good, my new kidney seems to be functioning very well, and I am enjoying life more like a normal person. Jenny and I attended a "Membership Celebration" at our church last night. It is an informal, informational setting that allows visitors to our church to learn about the church's core values and gives them a chance to become members. Jenny and I were there as "hosts" to assist three other couples that were thinking about church membership. It was good to be able to go to something like that, and I got an opportunity to speak to our pastor. He has been faithfully praying for me ever since I lost my kidney back in 2005. As we attend a large church, I do not speak to him personally that often, but when I do, he always asks how I am doing and lets me know that he is still praying. It was good to talk to him last night and let him know that I am feeling very healthy and that all of the prayers were appreciated. Oh, and all three couples at our table decided to join the church, so that's good news, too!

I am still preparing for my Glofil test on Thursday. They have me scheduled in the afternoon group for that day. I am also having my weekly follow-up clinic appointment that day, so I need to remember not to take my Prograf that morning. (I just moved my Prograf out of the Thursday morning container and in to the Thursday afternoon container, so I will not be taking it with my morning medications). The doctors do not want you to take the Prograf before you blood is drawn so that they can get an accurate level of how much Prograf is in your system and decided if you have too much or not enough in your blood to keep you healthy. Anyway, the Glofil test is coming up, and I am supposed to be hydrating myself all week in preparation. I have had about 30 ounces (887 ml) of water this morning. I think my goal is supposed to be 96 to 120 ounces (2839 to 3549 ml) of water per day for the three days prior to the test. That's the same as having 1 1/2 2-liters of water (or close to a gallon of water) per day. I know I did not drink quite that much yesterday, but I think it will be okay. It has been quite a while since I have been allowed to drink that much per day, especially since that was about what I tried to stick to between dialysis treatments. But, I will drink water throughout the day, and hopefully when I go take my test, I will be hydrated enough to not have to drink too much during the test, which is nice.

In other news, I am continuing to walk just about every day. I have walked nine out of the last ten days, and except for one day when I ran out of time, I have walked 65 minutes a day. I am slowly increasing my speed on the treadmill (I walked at 2.5 mph this morning). I called and talked to my mother on Saturday, and she noted that I was able to carry on a conversation with her the entire time I walked. She said that means that I am not working my cardio-vascular system quite hard enough. I reminded her that as of a month ago, I was leading a sedentary lifestyle, and it might take a little bit longer before I am up to the point of getting a "good" work-out. Here is my walking log for the past 10 days:

DATE	DISTANCE	TIME
02/10/07	2.28 mi	65 min
02/11/07	2.36 mi	65 min
02/13/07	1.61 mi	44 min
02/14/07	2.46 mi	65 min
02/15/07	2.48 mi	65 min
02/16/07	2.59 mi	65 min
02/17/07	2.59 mi	65 min
02/18/07	2.70 mi	65 min
02/19/07	2.70 mi	65 min

So, as you can see, with increased speed comes increased distance. In another couple of weeks, I should be up to about four miles per day. I don't know if that will be a good goal or not, but it is at least something to look forward to. Once I get to the point of breathing hard and having my heart rate up by the end of my hour, then I will work on using the "incline" function of the treadmill so that my speed and distance do not have to increase, but I can continue to get a better work-out.

Well, that should about do it for today. I have to call my disability contact at work and ask why I have not received any money from the short-term disability. I am thankful that Jenny and I have been putting money into our savings account for the past couple of years. Otherwise, it would be very hard to live (as I have only been paid for 44 hours in the past four weeks). So, I will give him a call and find out what is holding up my disability payments. Hopefully that will get resolved today and I will get some income this week!

Please pray that the disability payments get worked out. Continue to pray that I will remain healthy. Pray that my Glofil test goes well on Thursday and that my kidney function will be high. And, continue to pray for the donor family and their loss.

Thanks for reading today!

Upcoming: First Post-Transplant Glofil Test

2007-02-15T15:27:00.000-06:00

As I promised yesterday, I am going to give you all a longer explanation of the Glofil test that I am going to be taking next week when I go in for my post-transplant follow-up clinic appointment.

Here is some information I got from http://www.netwellness.org/question.cfm/35412.htm:

Glofil is the trade name for a substance called 125-I sodium iothalamate. The name was derived from "glomerular filtration," which is a function of the kidneys. The kidneys' major job is to remove toxic waste products from the body. Blood passes through the kidneys and is continuously cleaned and purified. Each kidney contains approximately one million tiny filters called glomeruli. These microscopic filters work by sieving blood, retaining things that the body needs (such as blood cells and protein molecules), and discarding substances that are not needed, such as waste products that accumulate after processing of food. The waste products that are filtered out ultimately make up a large portion of the urine that is excreted from the body.
One way of measuring how well the kidneys work is to give a person a substance that gets filtered out by the glomeruli and excreted in the urine. Glofil is one such substance. It is administered intravenously, and its disappearance from the bloodstream is carefully measured and quantified. Because Glofil contains a tiny amount of radioactivity, the amount of it remaining in the blood can easily be determined by measuring the radioactivity in the body repeatedly over a period of time (usually several hours). The rate at which Glofil disappears allows us to calculate the rate at which glomeruli are filtering it out of the bloodstream, and thus to determine how well the kidneys are working. The amount of radioactivity in a typical dose of Glofil is less than that in a single chest x-ray.

So, you now have a technical idea of what this test entails. Now, I am going to transcribe the instruction sheet that they gave me to help me prepare (can I say I am studying for my kidney test?):

Glofil Procedure - Patient Instructions

You have been scheduled for a Glofil Procedure, to determine your kidney function.

Your Glofil Procedure will last approximately 3 hours. You will be with a group starting at the same time. The first group starts at 7:00 am, and the second group starts at 11:45 am. If you cannot make your appointment, PLEASE let us know, so we can reschedule.

ALL LATE PATIENTS MUST BE RESCHEDULED.

You may eat a light meal (not heavy) up to 1 hour before your scheduled appointment.
You may drink water any time.
If you are on LASIX, you must take it more than one hour before your appointment.
If you were given a small vial of iodine (Lugol's Solution) when you made the appointment, you may take it the night before by mixing the contents of the vial in approximately one ounce of juice. Diet Coke tastes the best, if you have that.
You will want to arrive as hydrated at possible, by drinking plenty of water. We suggest 12 to 15 eight-ounce glasses of water each day. Do this for 3 days prior to your test, unless your physician instructs you otherwise or has orders for liquid intake restriction.
You are advised that nausea is a commonly experienced side effect due to the volumes of water administered during the test.
You will not be able to drink any liquid other than water during your appointment.
Fresh filtered bottled water is provided by our facility.
If you choose, you may bring at least one gallon of your own water for your test. The water may be cold but it must not have ice in it.
Lastly, avoid alcohol consumption at least three days prior to the test.

Therefore, in an effort to make your experience as pleasant as possible, please try to comply with all suggested requests prior to and during your Glofil Procedure.

When you arrive, we will need a fresh urine sample. Please plan accordingly.
If you have not taken our famous Lugol's Iodine cocktail the night before, we will give it to you at least 15 minutes prior to your Glofil injection.
You will be given a calculated amount of water to drink during your test.
As previously advised, the amount of water given may cause discomfort and even nausea. Please, let your technician know so we can make the appropriate recommendations.
You will be instructed to void urine and collect every drop and have blood samples taken at regular timed intervals during the three-hour test. Please, remain in the Glofil department during the testing. Advise your technician if you leave the area.
You must not eat during the test, unless instructed.
You should not have had anything to eat one hour prior to the test. This may cause nausea and additional un-needed discomfort.
Avoid any caffeine and tobacco products during testing.

Other Considerations

You will not have a Glofil Procedure done if you are allergic to iodine. If you are allergic to iodine, your physician will order an alternate method.
You will not have a Glofil Procedure if there is any radiation present in your system. This would occur if you have recently had any type of scan or a stress test.
You will not have a Glofil Procedure if you are breastfeeding.
You should not have a Glofil Procedure if experiencing a menstrual cycle. We suggest that it be postponed.
If you are unable to make several trips to the restroom under your own power, you will need to bring someone with you to assist you.
Due to limited space, we ask that family members do not accompany patient in the Glofil waiting area, if fully occupied. Please use additional waiting areas provided so that we may accommodate all the scheduled patients. Any special requests regarding this may be discussed with the Glofil Technician at any time and we will certainly accommodate anyone if space is available.

If you have any questions or concerns, please call the Glofil Departmetn at xxx-xxx-xxxx ext 6269. Thank you, it is our pleasure to serve you.

So, there you have it. All my wonderful instructions. I guess I will start attempting to drown myself on Sunday or Monday, so that I am very well hydrated by Thursday afternoon. And, I have to remember to not eat after 10:30 on Thursday, and not to take my Prograf that day (though, that is because of my clinic appointment, not because of the Glofil Procedure).

I hope that information helped everyone understand what I will be doing next week. If you have any questions, feel free to post a comment or send me an e-mail!

Enjoy your week everyone!

Wednesday Clinic at the Dallas Transplant Institute

2007-02-14T16:12:00.000-06:00

Hello everyone! I know that you have missed me, and I am back, reporting some new news for my loyal readers.

I had my first follow-up appointment at the Dallas Transplant Institute (DTI) this morning. DTI is about 45 minutes away from where we live, as opposed to the hospital in Fort Worth which was over ninety minutes away. So, it is a much nicer and easier drive, and I was glad to go where I will now receive my permanent follow-up (as far as I can tell).

The clinic is pretty crowded, as they see more than just post-transplant patients. They also have a staff of about ten doctors and physician's assistants, which means that they can see more than the one doctor in Fort Worth was able to. This clinic is where I will go for all of my blood work and other tests that need to be done (hopefully from now on).

We arrived around 8:35am for an 8:40am appointment. There was not much parking, or we would have been in about five minutes earlier. They drew my blood and took a urine sample around 9:00am, which I think was probably what they had planned. They drew three vials of blood today, and tested my lipid panel, even though they told me I did not need to fast for this lab work. Oh well, my numbers were a little high, but that's okay. If they had wanted me to fast first, they should have said so when I asked.

I saw a Physician's Assistant around 10:00. She went over the procedures at DTI, and then went over my lab reports. My creatinine is still 1.0, which is great. The only number she seemed to even worry about was my Triglycerides, which were at 282 mg/dL. That is a bit high, and she said they might have to test that one again when I am fasting. I said that I am exercising, and she said that would help. She also said I might need some dietary changes to help lower that number. I have a dietary guide, but I have not read it yet. Maybe I should do that!

In other news, they scheduled me for a "Glofil test" next week. This test accurately measures your kidney function based on how much of a certain radioactive iodine you can excrete in three or four hours. You have to be very well hydrated to take the test. It is a normal part of being a post-transplant patient, and I expect to take many more Glofil tests in my lifetime.

The Glofil test is scheduled for Thursday the 22nd. I am also going to go back to the clinic on that day to have my blood work and doctor's visit. They scheduled them at the same time for me so that I would not have to drive down there more than once next week, which is nice.

I also got a call this afternoon to lower my Prograf dosage from 3mg twice a day to 2.5mg twice a day. My Prograf levels were a bit too high, I guess, so they lowered them a little. Hopefully, this will help control some of the shakiness I am feeling in my hands whenever I try to do fine motor-skill related tasks (such as writing).

Well, that's about it for today. Here are my lab results. You may notice that they are in a slightly different order and are a bit different than my previous results. That is because I got them from a new clinic which has different software for processing and displaying results. It might make it more difficult to compare to older results, but all the important information is there.

Enjoy!

PROCEDURE	RESULT	UNIT	REF RANGE
[Profile: CMP]
Creatinine	1.0	mg/dL	0.4 - 1.0
Blood Urea Nitrogen	11.0	mg/dL	8.0 - 20.0
Sodium	137.8	mmol/L	136.0 - 144.0
Potassium	3.7	mmol/L	3.6 - 5.1
Chloride	110.8	mmol/L	101.0 - 111.0
CO2	24.7	mmol/L	22.0 - 32.0
Glucose	70 L	mg/dL	74 - 118
Calcium	9.3	mg/dL	8.9 - 10.3
AST	26.0	U/L	15.0 - 41.0
ALT	59.0	U/L	17.0 - 63.0
Alkaline Phos	75.0	U/L	38.0 - 126.0
Albumin	4.5	g/dL	3.5 - 4.8
Total Protein	6.4	g/dL	6.1 - 7.9
Total Bilirubin	0.7	mg/dL	0.4 - 2.0
[Profile: LIPID PANEL]
High Density Lipoprotein	65.2	mg/dL	35.0 - 85.0
Low Density Lipoprotein	79.8	mg/dL	0.0 - 100.0
Cholesterol	171.0	mg/dL	0.0 - 200.0
Triglycerides	282 H	mg/dL	0.0 - 200.0
VLDL	56.4		0.0 - 40.0
Cholesterol / HDL Ratio	2.6		-
[Profile: GCT]
GCT	64.0 H	U/L	7.0 - 50.0
[Profile: MAGNESIUM]
Magnesium	1.7 L	mg/dL	1.8 - 2.5
[Profile: PHOSPHORUS]
Phosphorus	3.0	mg/dL	2.4 - 4.7
[Profile: CBC]
WBC	8.2	K/uL	4.0 - 11.0
RBC	4.28	M/uL	3.8 - 6.2
Hgb	114.3	g/dL	11.5 - 18.0
Hct	43.2	%	35.0 - 54.0
MCV	101.0 H	fl	80.0 - 100.0
MCH	33.3	pg	27.0 - 34.0
MCHC	33.0	g/dL	31.0 - 36.0
RDW	13.2	%	11.5 - 14.5
Platelets	245	K/uL	150 - 450
# Neut	5.05		1.40 - 6.50
% Neut	61.60	%	42.20 - 75.20
# Lymph	2.63		1.20 - 3.40
% Lymph	32.10	%	20.50 - 51.50
# Mono	0.41		0.10 - 0.50
% Mono	4.95	%	1.70 - 9.30
# Eos	0.03		0.00 - 0.70
% Eos	0.40	%	0.00 - 7.00
# Baso	0.08		-0.00 - 0.20
% Baso	0.97	%	-0.00 - 2.50

Stay tuned tomorrow to hear all about the Glofil Procedure Patient Instructions! You won't want to miss it!

Walking for Exercise

2007-02-09T17:01:00.000-06:00

I started seriously walking this week. The transplant doctor said that walking was good, safe exercise for a post-transplant patient. So, I have been heading down to the fitness center every morning to walk on the treadmill.

Here is a chart of how my walking has gone this week:

DATE	DISTANCE	TIME
02/04/07	1.17 mi	35 min
02/05/07	1.33 mi	40 min
02/06/07	1.50 mi	45 min
02/07/07	1.66 mi	50 min
02/08/07	1.92 mi	55 min
02/09/07	2.15 mi	62 min

The exercise has been good for me. It helps me feel better, overall. I think that I am now in better general health, especially if I am exercising every day. This week, I worked on getting my time up to one hour. As you can see from the chart above, I started with a little over a half hour, and have worked my way up to an hour, slowly.

My next step is to increase the distance that I walk. I will do this my increasing the speed on the treadmill. I started out walking about 2.0 miles per hour. This morning, I walked at about 2.1 miles per hour. This is comfortable, so I will probably do that all next week, just to get used to that time, speed, and distance.

Maybe the following week I will increase the speed to go as fast as is comfortable at a walking speed. I do not want to run, but walking is fine. So, I will slowly work my way up to a fast walking speed at about an hour.

I'll have to see, once I go back to work, what I want to do as far as exercising. I am trying to decide if I want to walk prior to work each day, or when I get home. If I go before work, then I can shower and eat after exercising and before going to work. If I exercise when I get home, then I will have to change clothes into some exercise gear (and be sweaty in the evening when I get home).

So, I will make that decision when I get to that point. Please pray that I will continue to feel well during my recovery (which is going great so far). I am supposed to go to the clinic on Wednesday in Dallas (instead of Fort Worth). I haven't received a call from the clinic yet, so I will have to check in with them on Monday and find out what time my appointment is.

Thanks for reading!

A Couple of Illustrations

2007-02-07T18:17:00.000-06:00

Hello everyone! Welcome to Wednesday. I got bored with my camera phone the other day, so I thought I would take a picture of all of the medication that I am taking. Now, bear in mind that my camera phone supports a mighty 320 x 240 resolution. So, the not-so-wonderful picture is not your screen, it is the picture itself.

The picture is divided into four quadrants. The upper left-hand corner is all of the medications that I take at 9:00am. The upper right-hand quadrant contains the lunch-time medications. The lower left-hand corner is one pill that I take after dinner. And, finally, the bottom right-hand corder contains all of the pills that I take at 9:00pm.

You can see the big white round pill, which is an anti-fungal that I take four times a day. The purple-ish oblong pill is Cellcept, which is one of my immunosuppressants. There are four small white pills in the first picture which are the Prednisone (20mg total). The tiny white capsules are the Prograf, there are three in the 9am and 9pm pictures. The smaller white circular pill is the Bactrim (anti-bacterial). The pink oblong pill is the Valcyte (anti-viral).

In the bottom corner, you see two blue pills. Those are Cerefolin (a multi-vitamin). Another long oblong white pill (also in the first picture) is the Calcium + Vitamin D. There is also some folic acid, Zyrtec, and Lipitor in the bottom picture:

So, those are all of the medications that I take each day. They help me to stay alive (and healthy) and help keep my new kidney happy.

I also played with a diagram I found online of the human body. I drew a bunch of lines on it to show where all of my surgeries have been. For reference, the fistulas are on my left arm. The new kidney was put on the right side of my body. And, the surgical scar that is left from my kidney removal runs from the bottom of my sternum to right below my belly button.

Hopefully that picture came out well. Enjoy my skills with Microsoft Paint. And, enjoy the pictures (even if they are fairly simple).

Have a great day!