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!!

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.

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!

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).

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!

After the Cystoscopy

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

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

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

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

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

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

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

(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.

Post-Transplant Clinic: April 2, 2009

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

Here are my results (of note):

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

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

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

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

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

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

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

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

2009 Glofil Test and 2nd Kidneyversary

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!

Many Tests Later ...

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

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

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

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

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

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


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

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

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

Orbits and visualized intracranial contents are unremarkable.

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

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

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

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

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

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

May 13, 2008, Transplant Follow-Up

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

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

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

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

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

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

TB Results: Probably No

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

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

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

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

That's it for today.

Happy Birthday to Me!

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

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

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

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

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

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

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

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

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

11 Months Later: The Transplanted Kidney Works Great!

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

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

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

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

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

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

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

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

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

Answering a Question

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

Hi Nathan,

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

God bless,

Cindy

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

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

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

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

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

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