Nephrologist Update: April 7, 2011

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

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

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

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

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

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

See you later!

Cardiologist Update: April 5, 2011

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

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

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

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

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

See you next time!

Kidney-versary #4 (And Other News)

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

Post-Transplant Lab: October 07, 2010

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

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

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

Glofil Appointment and Labs from January 13, 2011

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

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

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

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

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

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

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

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

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!

Cardiologist Appointment - June 18

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

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

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

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

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

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

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

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

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

See you next time (probably after July 10).

Two Weeks Later: An Update

Hello everyone! I know what you are thinking. It has been nearly two weeks since I have posted to my blog. Just so you know, I have not died, so you don’t need to delete your bookmarks just yet. I have been extremely busy at work, and I’ve had my share of ups and downs with dialysis, so it’s been quite eventful. I will try to summarize the goings on today.

The last time you heard from me was on Wednesday, April 12. I had spent three hours (overnight) in the emergency room thanks to a terrible dialysis treatment. I was dehydrated, feverish, and nauseated (which is not a good combination). They treated me and sent me home. The ER doctor said that he really didn’t know what was wrong with me and was sorry that he could not help more.

On Thursday, April 13, I had another treatment. It went much better. We upped my dry weight from 69.0 kg to 69.5 kg, which seemed to help quite a bit. My heart rate was still higher than it should have been after my treatment, but I think that had a lot to do with my medication being wrong. When I stood up at the end of my treatment, at about 8:45, I had a blood pressure of 88/55 with a pulse of 151. They kept me for observation for almost an hour. They gave me some water and had me sit back down. When I left around 9:30, my blood pressure had gone up to 127/60 with a pulse of 104 (while seated) and a blood pressure of 90/51 with a pulse of 135 (while standing). I promised that I would go to the ER if there were any problems, and I assured them that I had a cardiology appointment the next day.

On Friday, April 14, I had an appointment with my cardiologist. I brought her a list of my blood pressures at dialysis, which showed that my pressure was low with a high heart rate at the end of my treatment (ever since I had stopped taking Toprol XL about two weeks earlier). So, my cardiologist changed my blood pressure medications, again. She told me to stop taking my 5 mg per day of Norvasc. She said to reduce my 320 mg per day of Diovan down to 160 mg per day. She also added in 25 mg per day of Toprol XL. In addition, she set me up with a 30-day event monitor to watch my heart for the next month to make sure I am not having any “real” problems. The heart monitor isn’t difficult, it just makes showering that much harder.

So, my dialysis on Saturday, April 15, went a lot better. My pulse was still in the 100’s when I left, but since it was not in the 150’s, so they were not as worried about me. The treatment on the 18th (Tuesday) went well, as did the Thursday treatment (April 20). The next problem I had, with dialysis, was on Saturday.

On Saturday, April 22, my chest hurt around my catheter all day long. Every time I moved my arm, or used the muscles in my chest, I had shooting pain go from the catheter out towards my sternum. I thought it might not be so good, so I decided to complain at dialysis. I went to dialysis, and they cleaned the catheter insertion point like they always do. While the nurse did this, I mentioned how much it hurt for her to touch it or for me to even use those chest muscles. She told me that there was not redness, swelling, or pus, so I should not worry about it. I told her that it still hurts, even if it doesn’t look like it.

At the end of the treatment, the nurse did quite a bit of tugging on the catheter tubes while unhooking me. This was very unpleasant (as you might imagine). I winced and decided to give it a few minutes to get better. I took some Tylenol when I got home, but my chest was still bothering me. I called the insurance company 24-hour, toll-free nurse line and gave them my symptoms. The phone-a-nurse said I should probably go to the ER, even though she didn’t think there was a problem. It’s one of those “better safe than sorry” policies that you are always glad exist when you DO have a problem.

Jenny and I went back to the emergency room (this time, it was only about 10:00 pm). The nurse at the registration desk was the same one who checked me in last time, so she moved me into a room within about 15 minutes, even though I told her that my chest pain was NOT heart related. I laughed when I saw the doctor, because he was the same doctor that I had seen a week before that didn’t know what my problem was with my elevated temperature and blood pressure. This week, he ordered an x-ray and had me sit for a while. When he came back, he told me that he was again dumb-founded. I had presented him with symptoms that he could not quantify, and he said to take some pain medication and get some sleep. I told him that I would try not to come back next week with yet another impossible problem.

That pretty much catches you up to today. I’ve got a few more updates, but I think I will wait and try and get those posted tomorrow so that this post doesn’t go too much longer. Look forward to a riveting account of my visit with my vascular surgeon, my endocrinologist, my April Lab Reports, and hopefully a fistula update.
Thanks for bearing with my long absence and long post. Enjoy your day!

Bad Tuesday Dialysis

Tuesday night's dialysis treatment did not go all that great. I was okay for a little over three hours, but during about the last fifteen minutes of my treatment, I started to not feel so well. I was kind of light-headed and dizzy, with a bit of a headache, and I felt slightly nauseated. I told the technicians, and they gave me back some of my fluid. At the end of the treatment, I was still not feeling well, so they gave me back some more saline (500 ml in all). I stood up to give my final blood pressure and it was 90-something over 50-something with a pulse around 140 bpm. The nurse told me to sit down and to wait to see if it would balance out.

I stayed at the clinic for another half an hour waiting for my blood pressure and pulse to get within their normal ranges. The blood pressure remained low each time I stood, and my pulse was always much too high (usually in the 130's or 140's). The nurse wanted to call an ambulance, but I had my wife come to dialysis and pick me up, instead. I assured the nurse that I would go to the emergency room if I felt worse or did not start feeling better.

When I got home, I laid in bed for about 30 or 45 minutes waiting to feel better. I finally decided to check my temperature, thinking that I would go to the hospital for anything over 100.4. It turned out that I had 101.1, so we hopped in the car, and we went to the emergency room. I guess I had not been to the hospital with a problem in too long, and my body must have just missed it there.

We got to the hospital around 11:30pm. They got us in to see a doctor right before midnight. We talked about my symptoms and my dialysis, and we figured that a little more saline would probably help with my light-headedness. So, they gave me 250 ml of saline, and I laid on the short, uncomfortable ER bed for another hour. When the nurse came back, I was feeling less dizzy, but now I was much more nauseated than when I had come in. The doctor gave me some nausea medicine and let me lay there for a while longer.

He finally came in to say that he could either send me home, or admit me to the hospital for observation. He said it would be observation only has he had no idea what was wrong with me. By this point, I was feeling mostly better, albeit tired, and was ready to go home. I told him to just send me home, and that if I got to feeling worse after having some sleep, that I would come back to the ER to see him.

I went ahead and went to work today, even though I was a bit tired. I did not have any dizziness symptoms, though there was some nausea. The nausea did not bother me as it is not infrequent in the mornings for me. I took my temperature when I awoke and after I got home, and both were normal. Even now, right before I typed this, I was only up to 98.8 degrees.

Please pray for me that Thursday night's dialysis treatment will go better. I think I am going to ask them to raise my dry weight another half a kilogram to 69.5 kg. That will mean that I get to keep a little bit more fluid, and hopefully will help prevent me from having to take another trip to the ER. I appreciate and need your prayers. Thanks a lot!

March 2006 Lab Report

Hey there everyone. It is Friday afternoon, and I have decided to update my blog and let everyone know how I am doing. Things have been going decently this week. I have felt well every day (except this morning, when I felt a little ill). I have had good dialysis treatments and the technicians have not injured my arm in a while.

I went to the cardiologist’s office on Wednesday and had a nurse take my blood pressure. I also gave her a chart from my last two weeks at dialysis. The machine takes my blood pressure every half hour, so I have a fairly complete record. Since I have been experiencing a little bit of dizziness and some occasional near-blacking out (right after I stand up, not while driving or anything), the doctor said I should try and even out my meds. So now, instead of taking one 200 mg Toprol XL once a day, I am supposed to take one 100 mg Toprol XL twice a day (once in the AM and once in the PM). I started that yesterday, so there has not been a chance for any changes yet. Give it a week and I’ll see.

I have been enjoying my new dry weight of 69.0 kg (which is about 151 lbs). I had been having more cramps at home between treatments, and those are much fewer now. It is not any fun to be awakened in the middle of the night when your foot feels like it is trying to escape from the bottom of your leg. I had one last night and it was not enjoyable. I am hoping that we can figure out my proper weight and I’ll get back to feeling normal again.

As the title of my post suggests, I got my March lab reports back yesterday. The dietician is once again pleased with my report. All of my charts fell within the accepted ranges. I am pleased because my phosphorus went back down ½ a point. So, without further ado, here are the March labs:

• ALBUMIN: 4.6 (goal is 3.8 to 4.5)


• eKdrt/V: 1.47 (goal is greater than or equal to 1.2)1.47 is down a little from last month, but still is good.What this means is that my eKdrt/V is adequate, so I am receiving enough dialysis.


• enPCR: 0.59 (goal is greater than or equal to 0.8)This says that my protein catabolic rate (protein intake) is low. It recommends that I eat more fish, seafood, chicken, turkey, lean red meat, lean fresh port, eggs, or cottage cheese. The dietician says that has always been low because my one kidney still makes urine and passes some of that out of my blood stream.


• POTASSIUM: 4.3 (goal is 3.5 to 6.0)My potassium level is normal which means that I am doing a good job with the potassium in my diet (and the 3K solution at dialysis helps, too).


• CORRECTED CALCIUM: 9.0 (goal is 8.4 to 9.5)My corrected calcium is normal.


• PHOSPHORUS: 4.5 (goal is 3.5 to 5.5)My phosphorus was 5.5 last month, so this is exciting. This means that my phosphorus is normal and that I am doing a great job limiting high phosphorus foods and taking my binders with my meals and snacks.


• HEMOGLOBIN: 12.9 (goal is 11 to 12)Hemoglobin levels show how anemic I am, so this is always nice to be high (so I have some energy)


• AVERAGE FLUID WEIGHT GAIN: 1.86 kg or 2.7% (goal is 3 – 5% of dry weight)This is acceptable, and it feels good to me.

I again did not get my full lab report. Maybe I will be able to get a hold of it Saturday (and the one from February). I’d like to see my BUN, creatinine, and URR (all of which I was told are important).

Please continue to pray for my health. The longer a patient is on dialysis, the worse it is for them (overall). They say that you best chances for a transplant to work is if you can get one with as little dialysis as possible. Please pray for the donors and for the transplant office that all of the appointments and schedules will work out right. And, please pray for healing. If God chooses to heal me rather than to use a transplant, I will be VERY excited. I know that we do not get to pick the way that God chooses to deal with our requests, but I would like to pray for healing. I know that it is possible and that God will do what He knows is best for His glory in this situation. Thank you all for coming by to read and for offering your prayers with me. I really do appreciate it.

See you next week!

Friday, February 17, 2006

Well, I have not updated my blog in a while, so I think I am going to make myself do it. I have been quite busy at work this week (which is great). They have me working more on the stuff I enjoy doing rather than the data entry that got me in the door. I am enjoying my job more and more each day, and that is always nice when you do not have to be motivated to go to work.

The site where my catheter was removed has almost completely stopped hurting. It only bothers me now if I run into it with something. The shower does not hurt, and there are only two steri-strips left on it. They stick to the wound to hold it closed until you heal. They put them on my abdomen when I had my staples removed this summer. They stayed on about two weeks. I expect that these will be on about one more week.

I have an appointment with my endocrinologist on Monday. I am hoping that he will have looked at my lab results and decided that I am not doing badly. I hope that my thyroiditis will not require any further medications. I am still working with the cardiologist to try and fix my blood pressure. She has changed my hypertension medications every two weeks for the last six. She doubled my Diovan, then she added Norvasc, and this week she doubled my Toprol XL. Hopefully this last change will fix me so that I can know what I need to have prescribed.

Dialysis continues to go well. My fistula is working great (still). They should take another flow rate test next week to get a comparative reading. I don’t foresee any problems. I still have a strong thrill, and that’s a good thing. The thrill, for those of you who don’t know, is the feeling of blood rushing through the fistula. It is always supposed to be very easy to feel. Mine always has been strong, and now I can feel it in my elbow.

I am still having problems with my stomach. When I eat right after dialysis, I feel hot and sick for about 30 minutes. But, if I don’t eat, I feel hungry. So, which is better? Also, I get pain in my jaw for about a minute when I first start eating, but only right after dialysis. I have another appointment with the GI doctor next month, so I will ask her my stomach questions again.
You can continue to pray for my health and for the kidney donation process. I do not know when I should hear anything, but I am sure they will tell me when they are ready.

Thanks for reading!

414 Flow Rate

Last night at dialysis was the quarterly test of access flow rates. The technician told me that they do the testing on a regular basis, and since I am using the large needles now, they can go ahead and test me. If you remember, I had to get a fistula revision and a perm-cath because my flow rate was under 400 back in October. So, the test was all important for me. When it was finished, the technician told me that I was running at 414, which was great news. I also found out that the highest flow rate she had ever seen was 2000. That information suddenly changed my thinking. I had thought that maybe 500 was the top, so 350 was not so bad. But, if you can have a flow rate over 2000, then my paltry 350 was pathetic. Now that I am over 400, I hope that my fistula will continue to develop for as long as I am on dialysis.

I have to go to the hospital in about an hour to have my perm-cath removed. So, after two months, I will not have tubes hanging out of my chest! I am sure that having it removed won’t be the most pleasant thing I do all day, but I imagine that it won’t be worse than having the neck catheter inserted or removed. So, if you read this before 11am Friday, then know that I am on my way to feeling like a normal person again. If you read it after 11, then I am probably back at work sans-catheter. And, if you are reading this on Saturday morning, then I am enjoying a long, hot shower, so don’t call and bother me, lol.

There is not really too much more going on. I have one more treatment (Saturday) when I will be recording my blood pressure. I am on Diovan, Toprol XL, and Norvasc, at the moment. I will send another two weeks worth of BP data to my cardiologist on Monday, and we will see what she wants to do from there. My pressure has been down more often, but I still see it in the 150s from time to time. I don’t want it to drop too low, so the medication is a delicate balancing act.

Thanks for reading!

Time for an Update

It has been a while since I have written anything, so I figured that it was time for me to update everyone on what is going on. Last time, I gave everyone my January lab report that I got from dialysis. And of course, previously, I had mentioned that I started my transplant evaluation two Mondays ago. They have drawn a total of 22 vials of blood (so far) in my evaluation, and I am sure that there is more to come.

I went to see my cardiologist on Monday afternoon. My blood pressure has been quite high at dialysis since I was taken off of the Norvasc and put on the Toprol XL. Now, my heart rate was fixed by the Toprol XL, so I am grateful for that. But, I need my blood pressure to be lower so that I do not have a stroke or a heart attack. So, the cardiologist upped my dosage of Diovan from 160 mg / day to 320 mg / day. The Diovan has not had a chance to get into my system (at the higher level) yet, so I cannot report how well it is working. I am supposed to track my blood pressure for two weeks and then let the cardiologist know. If it is going well, then I am okay. If not, then it is time for more medications for me!

I have the “Living Donor Transplant Applications” sitting here on my desk. I am going to be looking for addresses to send them out to those of you who have asked if you could be tested for giving me one of your kidneys (thank you!!). I also have a DVD from the transplant people, which I may or may not be able to send out copies of. Be looking in your mail (or maybe e-mail, if I can convert them to an electronic format) in the next week, and be sure to send them back as FAST as possible.

Let’s see … in other news, I will start using my fistula again on Thursday. I have not used it in about seven weeks, which should be long enough for it to heal. The dialysis clinic said that they will use the small (17 gauge) needles so that there won’t be too much stress placed on the vein. I do not know if they will use one needle or two; I guess it just depends on what the doctor indicated in the chart (since he mentioned both at different times). I have not seen the doctor this week, so he should be there Thursday and be happy to see my fistula in use again.

I have been having stomach ache problems again lately. I thought that the Nexium had helped, but I seem to be having problems again. I am waking up not feeling well several days a week, which is certainly no fun. So, I have an appointment with a GI doctor next week, and hopefully she can find out what is wrong with me and offer some helpful solutions.

Please pray that my transplant evaluation will continue to go well and that they will find everything that they need. Also pray that I will not have to live with my stomach problems for much longer. It is all in God’s hands at this point.

Some of you are receiving this post by e-mail today and have no idea why. I had a few people in the orchestra and in my old ABF class mention that they would like to know how I am doing. So, for today only, I am sending a copy of this post out to those two group lists. If you would like to receive all of my updates via e-mail, then please REPLY to me and let me know. I can subscribe you to all of the new posts. Or, if you would like to just read these posts on the web, then go to http://nmccart.blogspot.com/. You can also subscribe to the ATOM feed at http://nmccart.blogspot.com/atom.xml.

High Heart Rate on Saturday

Well, dialysis did not go as well as it could have on Saturday night. For some unknown reason, my heart rate shot up at the end of my treatment. At the end of every dialysis treatment, they take your blood pressure while you are standing up to make sure that you aren’t going to pass out on your way home (since taking off all that fluid can really drop your blood pressure). My blood pressure was fine, but my heart rate was sky high. It started out at 157 beats per minute, and kept hovering around that number for about ten minutes. So, they had me sit down, where my heart rate dropped down to around 130 or 140. When I stood up a second time, my heart jumped to about 250 beats per minute (which is just crazy). They watched me for about 30 minutes, waiting on my heart rate to calm down, but it never went below 100 sitting and never got below 130 standing. So, they sent me home and said to go to the hospital if I had any problems over the weekend. I checked my pulse on Sunday, and it was usually around 100 sitting. So, I don’t know if there is anything wrong, but I guess I can ask the doctor on Tuesday when I see him.

I received a question posted in the comments section of my blog. I am going to reprint the question and attempt to answer it.

http://nmccart.blogspot.com/2005/10/new-job-new-insurance.html
COMMENT:
At 5:37 PM, Anonymous said...
Sounds like you are doing well and moving forward. Happy for you. Can you tell me anything that would help me know what I am facing with a double nephrectomy? Thanks

Wow, a double nephrectomy (which means having both of your kidneys removed). I will try and give you my experience with the single nephrectomy and you can probably just multiply everything I say by 2. Your mileage may vary.

For me, I had one kidney that was quickly swelling to fifteen pounds. I was in terrible pain for more than a week, and it took them several days just to decide to remove that kidney. As with all surgeries, I was told not to eat anything before the procedure, not that I was feeling well enough to hold food down. They gave me some nice anesthetics and I had a long nap. I do not recall anything from the procedure itself. All I remember is being rolled down to the preparation area in my gown (with my family in tow) and a slight burning as they injected the medicine. I gave my glasses to my wife, and the next thing I knew, I was in the Critical Care Unit (same as the ICU in other hospitals). I was extremely tired after the surgery, and they had me hooked up to a morphine pump (which I could use to dispense pain medication when I needed it). I stayed in the CCU for about two days. They only allowed visitors to come in for a few minutes every two hours (so that I could get some sleep). There was a lot of pain the first couple of days, but the pain medication really helped with that. I would also advise that you not pull out your NG tube while you are sleeping. The tube is designed to suck everything out of your stomach while you are recovering. And, since it was abdominal surgery, I was not allowed to have anything to eat. The doctor said that they had to wait until I started passing gas (which gets into your abdominal cavity while it is open) before I could eat anything. For me, that took five days. I think it might have been shorter had I not removed my NG tube on the second day after surgery.

I hope that this was a helpful insight into my nephrectomy. Like I said, for a double, it might take a little longer in the operating room (depending on why you are having your kidneys removed). If they are not both swollen to 15 pounds, I bet it goes pretty quickly. And, you recovery time will probably be at least two weeks. I did not feel like getting out of bed before the second day, and did not feel like standing long enough to take a shower until a week had gone by. I think that was the worst part, was that I could not really stand up for very long. And, it was exhausting to do anything that first week. Good luck with your procedure!

Thursday and Saturday

Friday was a very busy day at work, so I did not get a chance to post to the blog then, sorry about that. I am still not really feeling any better than I have been all week. I wake up and usually feel nauseated within an hour or so (which is awfully sad). This feeling lasts several hours most days. I talked to the nurses and the doctor at dialysis, and none seem to have any advice on how to make me feel better or get to feeling better on a regular basis.

I went to early-morning dialysis Saturday morning so that Jenny and I could go out tonight. The early morning treatment isn't that bad, but I wouldn't want to try to work all day after having it done. I definitely like having the dialysis after work rather than before. I don't think I could do that.

Both of my dialysis treatments (Thursday and Saturday) went well. I did not have any blood pressure or heart rate problems either day (unlike Tuesday when I had on the heart holter monitor). Perhaps my body is getting used to whatever was going on wrong before and my heart is now playing nicely with the machine.

Please pray that I would find out what is making me feel sick and that I would get to feeling better. Thanks for coming by to read!

Not Dehydrated Last Time

I had another successful dialysis treatment on Saturday. Whenever I go to dialysis, they always take my weight before and after the treatment. The goal of this is to help maintain my “dry weight”. This dry weight was determined at the hospital, before I started my first dialysis. They decided that I should weight 66 kg. Now, that isn’t much at all, and during my first outpatient dialysis treatment, they took off too much fluid, dehydrating me, and ended up having to add some extra fluid at the end of the treatment. So, they decided to up my weight to 67 kg. Since then, I am eating better (even on my restricted diet) and have gained a little weight. So, I think it’s time to up my dry weight again.

Thursday’s treatment left me with low blood pressure and a light-headed feeling. I saw my cardiologist on Friday. She told me that I had most likely gained weight and needed to let the clinic know to increase my dry weight. She said that I was probably having too much fluid filtered out of my blood, and I agreed. When I went to dialysis on Saturday, I only weight 67.7 kg (which is 0.7 kg above my weight). They ended up filtering off about 700 cc of fluid that night, and my weight when I left was 68.2 kg. They seemed a bit confused of how I could gain weight during a treatment, but I mentioned that they had had to add more fluid this time to keep my blood pressure and heart rate at a normal level and not drop too low.

I should get to see the nephrologist at the clinic next week and let him know that the cardiologist recommended increasing my dry weight on record. I used to weigh 165 pounds (which is 75 kg) before my surgery, so maybe I can get my dry weight at least back up into the 70's.

Here are some prayer requests I have for this week:

• I am scheduled to go back to work on Monday, August 29. Please pray that I will be well enough to perform my duties at work and that I will continue to stay healthy enough to keep up a full work and dialysis schedule after not doing anything all summer.
• Now that my insurance card has arrived, please pray that the transplant paperwork will be processed quickly so that I can get tested and put on the transplant list.
  

Low Blood Pressure

My dialysis treatment didn't go quite as nicely as I had hoped. It started out well with me getting a nice stick and a good flow rate. But, after about three hours, my blood pressure dropped really low. They had to stop the treatment and give me some fluid. They only took off about 2700 cc of fluid, instead of the 3000 that they had originally intended. I ended up weighing 66.7 kg, which is about 0.3 kg under my original preferred dry weight.

I saw the cardiologist today. She said that my problem with my blood pressure and heart rate was all due to me being dehydrated. She is going to call the dialysis clinic and instruct them to not take off quite as much fluid any more. She is going to recommend a dry rate of 68 or 69 kilograms to try and keep my better hydrated. She also said I should stop taking the beta blocker as that was not what I needed for my problems. I am hoping that this will help. I see her again in about two weeks. Hopefully Saturday's treatment will be better.

August 12

I had another successful dialysis treatment last night. The only problem that I had was that after my treatment, my blood pressure was low and my pulse was high. The nurse at the clinic said that I need to go see my cardiologist about my strange heart rate. When I am seated, my blood pressure is fine and my heart rate is slow. The doctor came by and prescribed a beta blocker to help regulate my heart beat. I'll have to ask the cardiologist what all a beta blocker does when I see her next week.

The doctor visit was not all that great. He arrived at the clinic about 7:00, and must have been gone by 8:00. He buzzed by my chair and dropped off a prescription. I did not get a chance to ask about going back to work. In fact, the nurse came by after 8:00 with a prescription for a phosphorus blocker. The doctor had written a one-month supply. I told her that my insurance company does mail-in prescriptions for 90-day supplies of medicine. She said that I should have mentioned that before the doctor left. It's too bad that I didn't know that the doctor had left or that he was going to give me another medication.

The speed of the doctor's visit reminded me of being in the hospital. If you do not have a list of questions written down and sitting in front of you when the doctor shows up, then you do not get to ask any questions. So, for next week, I am going to write down all my questions and hold them in my hand until I see him. That is the only way that I am going to be able to find out anything, it seems.

The other thing that I am still missing is my insurance card. I called my human resources representative at work this morning to check with Unicare and see why they haven't mailed my card yet. I can't order my new prescriptions or fill out my transplant paperwork until I get that insurance card. Hopefully I will either receive the card today or find out why I haven't received it yet. If it comes before Tuesday then I can turn in the paperwork the next time that I see the nephrologist.

Outpatient Dialysis has Begun

Last night was my first outpatient dialysis treatment. It went okay, but I guess it could have been better. I was there for four hours, and they originally had scheduled to remove 3 kg of fluid. It turned out that when they were finished, they had taken off too much fluid and it caused my blood pressure to drop very low. So, they gave me an extra 500 cc of saline solution which helped bring my pressure back up to normal. Hopefully Thursday's treatment will be better.

Yesterday, I got introduced to the world of dialysis. Each night when I arrive, I have to weigh myself in kilograms. This is to measure how much weight you have gained since your last treatment so that they now how much fluid to remove. Since they removed too much fluid last night, I think they said they are going to start a lot smaller tomorrow and work their way back up to a higher number.

So, I go to the clinic, weigh myself, and sit in a recliner next to a dialysis machine. The nurse checks my blood pressure and enters my weight into the computer. Based on my dry weight, they decide how much fluid to remove during that four-hour session. Then, the technician cleans the skin above my access with alcohol and betadine. They put one needle in for venous access and one needle in for arterial access (this needle is closer to where to fistula is tied). Once I am hooked up, they give me a little blood thinner to help the blood flow and then start drawing my blood out into the machine. The machine filters the blood, removes some fluid, and returns the clean blood back into my arm. That describes the next four hours of my night. They also gave me an injection of artificial hormone to help my body produce red blood cells, as I will always lose a little blood inside the machine.

Well, there's dialysis for you. I didn't have any problems with it in the hospital, but they didn't take off as much fluid then, either. I am hoping that tomorrow's treatment will be better. I will see the new nephrologist at the clinic every week, and he and I will talk about (and possibly adjust) my treatment more next Tuesday. Thursday should be better as I know they won't be taking off as much fluid.

Here are my prayer requests:

• Pray that dialysis will go well the rest of this week (no more scares)
• Pray that my fistula will continue to grow so that they can use the larger gauge needles
• Pray that my insurance card will come quickly so that I can turn in the paperwork for a transplant

I am Going to Start Dialysis

Well, I saw my nephrologist today. He said, based on how I am feeling and on my lab results, that I should go ahead and start on dialysis tomorrow. He has set up for me to be checked in to the hospital for about a week so that they can do inpatient dialysis and monitor me closely. I will probably do three or four days of dialysis this week, and then be released and scheduled for dialysis at an outpatient clinic.

I did receive the results of my Glofil test. It seems that my GFR is about 10 cc/min. That puts me well within range of the UNOS criteria for transplantation. So, after I get my new insurance on the 1st, then I am going to start the paperwork part of the process for getting a transplant. The doctor is very hopeful for me. He says that since I am young and my disease only affects my kidneys, I should be an excellent transplant candidate. He also expects that once I do receive a transplanted kidney, I should recover quickly and be able to live a long time with that transplant (as long as I continue to take care of myself).

So, my fistula is going to get tested out tomorrow morning, and all week, in the hospital. They will monitor me there to make sure there are no problems with my heart rate or my blood pressure. There are several possible things that can go wrong (as with any procedure), and they want to keep a close eye on me to make sure that I am okay.

My prayer requests are:

• That I would have good results from the dialysis next week
• That my fistula will work and I won't need a temporary dialysis catheter in my chest
• That I will start to feel better once my blood gets cleaned out

Welcome

This is my first blog post. The subject of my blog is going to be polycystic kidney disease. I'm going to try to fill in information about the disease itself as well as my struggle with it. Even though it is actually the middle of August, I am going to back-date the first several posts so that I can get my story posted in order. My real troubles started on May 30, 2005, so that is when the next post is going to be dated. I don't know if this kind of posting is accepted in the blogging community, but I don't really care. My point is to get my story out onto the Internet.

Hi, my name is Nathan, and I am 27 years old. I was first diagnosed with polycystic kidney disease at age 20 while attending college at the University of Arkansas. The following information about PKD is from http://www.pkdcure.org/:

Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined.

Polycystic means multiple cysts. In effect, PKD denotes multiple cysts on each kidney. These cysts grow and multiply over time, also causing the mass of the kidney to increase. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment.

PKD comes in two forms. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common, affecting 1-in-400 to 1-in-500 adults. Autosomal Recessive Polycystic Kidney Disease (ARPKD) is far less common, affecting 1-in-10,000 at a far younger age, including newborns, infants and children.

I was diagnosed with the autosomal dominant variety of PKD. That means that I have a fifty percent chance of passing the disease on to each of my children (when that time comes). After learning that I had PKD, I was told that I need to go and get a nephrologist (a kidney specialist). I found my first nephrologist in Dallas, TX, after I moved here in 2001. He took regular blood work and helped monitor any symptoms that I had.

The most common problem for kidney disease patients is high blood pressure, with which I was afflicted. High blood pressure, or hypertension, is easily controlled with medication. My nephrologist prescribed medication to keep my high blood pressure in check. I was also troubled with occasional kidney stones. Let me just tell you, kidney stones are NOT any kind of fun. Given the choice, I would have rather had someone beat me up on a regular basis than to have kidney stones. The doctor also watched my serum creatinine levels in my blood tests. A normal person's creatinine level is around 1.0, and my levels started out around 2.2. As your kidney function drops, your serum creatinine level continues to rise. My kidney function was diagnosed at 23% in 2002, and the doctor told me that if my function dropped below 20% that we would start the process of looking for a transplant. He also said, once my kidney function was less than 10%, then I would have to start looking in to dialysis.

Everything went pretty well for me from 2001 until May 23, 2005 (more in my next post).