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.

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!

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)!

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!

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!!

(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).

(246) Monday Misadventures and a Pending Cystoscopy

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.

2009 Glofil Test and 2nd Kidneyversary

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!

All Continues to Go Well

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!

Blog-Time Mail Bag

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!

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.

Cold

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!!

Doctor's Visit - 08/28/2007

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.

Post-Transplant Glofil #3

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!

Couple of Quick Updates

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.

Monday Clinic Update

Welcome to Monday evening everyone. I have gotten a few calls/e-mails today wondering if everything is OK, and it is. No need to worry, I was just busy today and therefore slow at blogging.

I had my final appointment at the clinic in Fort Worth this morning. The doctor said that everything is looking great. He had his nurse remove my staples from the surgery scar, and they did not have to use any steri-strips (since the wound had healed very well on its own).

The doctor also transferred me to the Dallas Transplant Institute (DTI). That clinic is much closer to home (about one hour rather than two). The doctor told me that I will be seeing a team of doctors rather than just one doctor. I may not see the same person two visits in a row, but the whole team has access to all of my reports and my data, so it should be OK. I will see next week when I go to the clinic. My next appointment should be Wednesday, the 14th.

So, I am feeling great. The doctor said that my heart burn was probably caused by the Cellcept. He said that I should just take some Mylanta or something similar to help with it. He would rather not reduce my Cellcept dosage since I am still within a month of my transplant. The doctor said that they might reduce it later on, if it is still a problem, but not right away.

I have been also experiencing a small amount of shakiness in my hands. They are not what I would call "tremors" but they are not normal steady hands. The doctor said that my minor shakiness was caused by the Prograf. He said that the levels in my blood might still be a little too high, but they did not call today to change my dosage, so I guess that was not the case.

I received today the "Prednisone Taper Schedule" from the nurse. This is a schedule that tells me how to reduce my Prednisone over the next several weeks. The reduction is as below:

Date	Dosage
Jan 11	20 mg / day
Feb 12	19 mg / day
Feb 19	18 mg / day
Feb 26	17 mg / day
Mar 5	16 mg / day
Mar 12	15 mg / day
Mar 26	12.5 mg / day
Apr 23	10 mg / day

So, starting Monday, I will be taking 19 mg of Prednisone a day. I doubt that there will be much change in the side effects until at least the 15 mg dosing. I do not know how quickly that I will notice the change, but it will be nice to take less medication.

Also, I got my computer from work today. My boss is ready to approve me to work 20 hours a week from home. All he has to do is to update a form that he submitted to have me off of work and then I can do some work from home. That will allow me to be paid part time from work and part time from the disability. That will give me something to do (which is nice) and also will help me get paid a bit better than disability.

That is about it for today. I have my full lab report from today's blood work, but since this post was so long, I will save it until tomorrow.

Thank you all for your continued interest and prayers!

Letter to the Donor Family

My last post described the guidelines for writing to the donor family. I have composed that letter, and am going to share it here with my readers, in its entirety.

---

Dear Donor Family,

My name is Nathan, and I received one of the kidneys that you chose to donate on January 11. I am a 28-year old computer engineer. My wife Jenny and I have been married for a little over two years now.

I was diagnosed with Polycystic Kidney Disease in 1998 while I was attending college. The nephrologist at the time said that I would have to watch my blood pressure, and that I would probably not have many problems with my kidneys until much later in life. I found out that I had the kidney disease because of a kidney stone. Polycystic Kidney Disease (or PKD) is a genetic disorder that causes the working cells of the kidneys to be replaced with fluid-filled cysts that gradually decrease the functionality of the kidney over the life of the disease.

In 2005 (at age 26) I got very sick. It turns out that there was an infection in my left kidney that was causing the cysts to bleed into each other. I was in the hospital about a week, during which time my kidney swelled up to about 15 lbs. The doctors had to remove my left kidney to keep it from causing any more problems than it already was. Before this, my kidney function was almost 20% of normal. After the surgery (and the month or so of recovery), it was discovered that my kidney function had dropped to less than 10%. I was terribly sick for most of 2005, barely being able to work or anything.

I started hemodialysis in July of 2005. I have had two fistulas. The fistula is a vein surgically tied to an artery which allows you to receive dialysis. The first one (in my lower left arm) did not work very well, so my dialysis treatments did not seem to help very much. After about ten months, the first fistula quit working and I had to have a temporary chest catheter installed. The surgeon gave me a second fistula in my upper left arm, and we waited for it to be usable (six weeks). This second fistula was tricky to use due to the vein being very twisty, and hurt more than the first one to have needles put in to it, but it worked for dialysis much better. After not feeling well for over a year, I was finally starting to feel slightly better. Of course, it did not help that dialysis was three times a week for four hours at a time. This was definitely not the way to feel normal.

I spent the second half of 2005 trying to get on to the kidney transplant list. I finally got to do my testing in January of 2006 (putting me on the list). I had three people get tested to see if they could donate a kidney, but only one was compatible. We were finishing up the testing with her when we got the call from the hospital. I cannot tell you how excited that I was to know that I could finally get a kidney.

Now that I am back to normal, I am sure that my life will be much better. My wife and I play string instruments for our church orchestra. We will be glad to not have to miss any more special performances for being sick and having dialysis. We will no longer have to skip Sunday School socials because I can not eat any of the foods that dialysis restricted me from. We should not miss nearly as much church this year from being sick, and I am thankful for that.

We are also hoping to get to travel now that I am healthy. My wife's grandmother lives out of state, and I have never met her. We were going to go visit her right before I got sick in 2005, but that had to be canceled. Now that I am well again, we hope to be able to go and see her. We would also like to do some vacationing that lasts more than a day, since that was about as long as we could be away from home while on dialysis. My parents also live out of state, and it will be nice to go and see them. I have only been able to travel home one time since I started dialysis.

Again, I want to thank your family for this gift of life. I have personally been praying for your family since I received the transplant. I know that the grief that you feel must be awful, but I hope that it helps you to know that your choice has dramatically improved my life. I thank God on a daily basis for your family and for your gift. I doubt that it was an easy decision, but it is certainly one that will have a wonderful impact on me for years and years to come.

Thank you again,

Nathan

---

Keep in mind that the letter is to remain fairly anonymous. We are going to take it to the hospital with us on Monday and see if we can drop it off there to be delivered to the organ bank and eventually to the donor family.

Please pray that the family will receive this letter well. I do not wish to cause them more pain than they have already had to go through with losing a loved one. I just wanted to express my appreciation for all that they have done to change my life for the better.

I hope you enjoyed the letter, and remember, you can subscribe to receive these blog posts automatically by putting your e-mail address in the box on the right side of the blog page.

Friday Clinic

It has been a long day, and I am now (finally) home for the weekend. The doctor changed our clinic appointments from Monday, Wednesday, and Friday, to Monday and Friday. That means that we will not have to live in Fort Worth next week. We will just drive down for the two appointments and then head back home after each one. It will make for some early mornings, but I think it will be better than having to stay out of town and live in a hotel.

I will start out with a few of my lab numbers from this morning:

• Potassium was 3.9 (down from 4.3 on Wednesday)
  
• Creatinine remains at 1.0
  
• BUN was 14 (up from 9, but still an excellent number)
  
• Glucose was 82 (which means that I should be fine as far as blood sugar goes)
  
• Hemoglobin is up to 12.7 (the normal range is 13.5 to 18)

I will probably stop tracking the glucose since there is not a problem with that anymore. The only other abnormal reading that I have been getting is my magnesium. It was 1.6 on 1/19, 1.6 on 1/22, 1.4 on 1/24, and 1.5 today. A normal reading is between 1.7 and 2.6 mg/dl. Following is what Wikipedia has to say about magnesium:

Magnesium ion is essential to the basic nucleic acid chemistry of life, and thus is essential to all cells of all known living organisms. Many enzymes require the presence of magnesium ions for their catalytic action, especially enzymes utilizing ATP, or those which use other nucleotides to synthesize DNA and RNA ... Although magnesium is present in many foods, it usually occurs in dilute form. As with most nutrients, daily needs for magnesium are unlikely to be met from a single serving of any single food. Eating a wide variety of foods, including five servings of fruits and vegetables daily and plenty of whole grains, helps to ensure an adequate intake of magnesium.

So, the doctor said that if my magnesium stays too low, that I would have to start taking some magnesium supplements.

In addition, I had a bone density scan done on Thursday. This scan is done on all new transplant patients, to get a base line of your bone density. The doctor said that I had a lowered bone density, a condition called "osteopenia."

What is Osteopenia?
Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis.

For this condition, the doctor said that I would need to take calcium supplements with Vitamin D. He prescribed OsCal-D (500mg) to help increase my calcium levels and hopefully add a little bone density. It seems most likely that the prednisone can cause a lowered bone density. So, they are going to try and head off the problem early by putting me on calcium supplements. I guess we will be heading to the pharmacy tomorrow to see what we can find. I will be taking one of these pills twice a day for the next six months, at which time they will re-assess my bones and check the density again.

Speaking of medication, the post-transplant nurse called me this afternoon to alter my Prograf. Currently, I am taking 4mg twice a day. They said that my Prograf level was at the high end, so they lowered me to 3.5mg twice a day. The new 1/2 mg pills are on order and should be here in a few days. Until then, I will take 4mg in the morning and 3mg in the evening. Hopefully that will help balance out my levels (once I get the correct dosage in my system). It seems that Prograf is just one of those medications that has to be adjusted on a per-patient basis in order to keep the proper amount in your blood.

I also went by my old dialysis clinic this afternoon when we got back to town. I dropped off my Phoslo and Fosrenol medication to the clinic. Since my pharmacy requires me to order 90-day supplies of my medications, I had quite a bit of this phosphorus-blocking medication on hand. I wanted to be able to share this medication with other people that might have a harder time paying for much-needed medications. So, I dropped the medications off with the dietitian to distribute on an "as needed" basis. I know that I benefited from free medication before I started dialysis. I was on a "less good" health care plan that did not want to pay for Epogen shots (around $1500 each). The nephrologist I had at the time happened to have 4 shots in his office that a patient had dropped off after starting dialysis. One good deed and all ...

One other change. For those of you that receive my blog via e-mail, you will continue to receive it. I was just getting a large number of messages that I was forwarding each time I updated the blog, and my e-mail was about to start complaining. So, instead, I created a mailing list on Google Groups. Those of you that were receiving the mail before will continue to receive it in the exact same way. The only difference you will notice is a short footer explaining how you can subscribe or unsubscribe to the mail outs. You can forward this to your friends that want to be a part of the mail-outs. They can then subscribe if they want to. Also, on the upper right hand side of the blog page, you will notice a white block. You can put your e-mail address in this box and subscribe if you want automatic mail-outs whenever I update the blog.

So, let me know if there is a problem with your automatic mail-out. Otherwise, enjoy the new method of delivery (which should not show much change for you).

Please continue to pray for the following:

• Pray for my continued recovery from the transplant surgery
• Pray that the staples holding my incision closed will be ready for removal on Friday (that is when the doctor wants to take them out)
• Pray for the family of the kidney donor, as they are still grieving the loss of a family member
• Pray for my sleeplessness. The prednisone causes insomnia and I am taking sleeping pills. I would like a less addictive solution for this problem.

Thank you for reading the blog today. Let me know if there are any problems. And, feel free to sign up (if you are a new reader and want to receive automatic updates).

7 am Monday Morning

Welcome to Monday morning, faithful blog readers. I can see (by looking at my counter statistics) that my daily readership has gone up quite a bit since Thursday night. I guess a few more people have become interested since I received my transplant!

So, there is not too much to tell this early in the day. I was having a little pain in my calf yesterday, so they did a scan to make sure there was not a blood clot. The nurse told me that it was all clear and that there were no clots in my leg. This is good. I have been walking around a lot, so I did not expect there to be any problems.

My blood pressure was 139/66 this morning. I am not sure if they are giving me any medication for that yet or not. It has been fluctuating up and down a little bit around that point since the transplant. They weighed me this morning, and I was 80.3 kg, which is the heaviest I have ever been. This is a result of the anti-rejection medications, especially the steroids, but that should get better as that dosage gets reduced.

I have a central line in my neck that was placed for emergency blood transfusions during surgery but was never used. They had it hooked up until yesterday to put in my IV fluids. They removed the IV Saturday, but left the line in to draw blood. This morning, however, the central line did not work so they had to do a stick in my arm. I am hoping that they will remove this central line from my neck, as it is not the most comfortable thing you can have installed.

I am feeling pretty good today. I am hoping that since it is Monday, we will see the post-transplant nephrologist and he can start talking to us about what to do once we go home (which should be on Tuesday). As of this point, I don't know if we will go home or if we will try to stay at a hotel in the area. We have to come to this hospital here in Fort Worth for the next two weeks (on Mon, Wed, and Fri) and I don't know if we want to drive the whole hour down here that many times. We will have to see. The insurance was supposed to have an allowance set up to allow us to stay in a hotel, but I don't remember exactly how to access it. We will have to talk to the social worker today or tomorrow and find out if she learned anything about it.

Well, hopefully, breakfast will be here soon and I will get to eat. I enjoyed having yogurt for the first time in over a year yesterday. I hope I ordered some more for today. It was really very good, and I know I have been missing my dairy products. I had cheese on my sandwich for lunch yesterday, and I had some pudding for supper. Mmm.

Well, not more posting for this morning. I will try to update again if anything else happens. If you want to call this hospital room, the number is 817-922-2817, and I should be here until probably Tuesday.

Thanks for coming by to read!