July 3: Urologist Visit (Informational)

Good morning everyone! I visited my urologist yesterday afternoon to discuss the results of my sonogram that the nephrologist took last Friday when I was in for my quarterly visit. I never really enjoy visiting the urologist, even though he is a very nice person.

He said that my transplanted kidney was looking pretty good. He was pleased with my lab results and said that it was very possible for me to get twenty to thirty good years with my transplant. That's always exciting news. The more years with this transplant, the better I think it will be.

First of all, the doctor did not believe that he would have to remove my native (PKD) kidney at this time. He said that he wants to go and do another cystoscopy (click if you like super-detailed medical info) of my bladder and possibly my native kidney as well. This time, however he suggested that we do the procedure in the hospital, instead of in his office. That way, if he does find something small that needs to be removed, he will be able to do it right then. He won't have to schedule a second appointment to go back inside, look around again and remove the problem.

It doesn't sound like he thinks he will find anything, but he wants to be on the safe side.

I was glad that he did not want to remove my other kidney. He said that removing it would always be a last resort for him. He doesn't like to put the patients through the recovery if they don't need it. He also said it meant that my medications would need adjusting again (to account for something, I'm sure).

I'm scheduled for the procedure on July 19 at 7:00 am (yippie). Guess I'll have to ask for that day off when I get back to work tomorrow. We'll be up in Frisco, so I get to visit a new hospital.

I'm hoping that the doctor either finds nothing, or that anything he finds is minor enough for him to take care of it while he is in there poking around. The best thing is that I should not have to go back in to have any more work done for a while. And, it's possible that he may be able to get rid of whatever causes random pain in my native kidney (which would be nice).

I'll update again after the 19th. Not that day, probably, as I'll be a bit out-of-it.

Thanks for your continued prayers!!

It's Been Two Years Since My Last Blog Post

First up, the good news: Everything is going great with my transplant!

Okay, now that I've got that out of the way, I can share a few other things with everyone. I've been seeing my transplant doctor (the nephrologist) now about four times a year since my transplant. They are very pleased with my health, and my creatinine is always very good for someone with a replacement kidney.

Also, I've still got my old kidney. You know, that one with the Polycystic Kidney Disease? It's hanging out in my right flank (lower back) where it's supposed to be. It doesn't do a whole lot, except hurt sometimes. A few weeks ago, it hurt A LOT. For two or three days. Then, it stopped hurting, and I began passing blood in my urine (not all that wonderful, I tell you).

This went on for a few weeks, until I saw my nephrologist. As part of my exam, before I had even mentioned any symptoms, they had me scheduled for a sonogram of my native kidney and a bone density test. I haven't checked the results of the bone density, but it's probably pretty good since the doctor didn't mention it while I was there. The sonogram, however, is a different story.

The doctor saw what he believed to be blood clots hanging out in my sonogram. Now, he's not the doctor that actually reads sonograms (not sure what that title is). He just looked and didn't like what he saw. He thinks that there are some blood clots hanging out in that old, bad kidney, and he wants to have it looked at my my urologist.

So, I am scheduled to see my urologist on Wednesday afternoon. I'll find out there if there are blood clots in the kidney and if we need to start talking about having that kidney removed. This would not be my preference, as the recovery will not be fun, and the cost will also be NOT fun. This is one of those times that I need to be part of the US Senate or House of Representatives. That way, I could actually afford surgery. But, I don't see "being a Federal elected official" in my future.

I'll know more Wednesday. Maybe I'll post again Wednesday, or maybe Thursday? We'll see.

Prayers would be for a good outcome on Wednesday from seeing the urologist. Blood clots would be bad.

No Throat Cancer

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

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

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)

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

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

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)

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

It appears that I have "won" an award from [redacted]. 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

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

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

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?

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

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

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

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

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

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

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!