Transplant Evaluation - NUTRITION??

Okay, here is the latest....I went to my transplant evaluation meeting on Friday. I met with many different people -- each of whom got to listen to my heart and palpate my tummy. Perhaps this is a method of medical "checks and balances." hmph.

I met with the transplant coordinator. One of the most competent employees at the Medical Center that I've ever met. Honestly, I often deal with the "least common denominator" employees when dealing with making appointments, trying to contact my doctor, paying my bill...and yet I know from experience that the medical professionals are truly competent. Well, this was the most impressive medical experience I have had. The coordinator was professional, knowledgeable, responsive, etc. She's terrific. She had her staff make appointments FOR ME! They called me promptly and they scheduled my multiple appointments together on a single day. They speak in complete sentences and they are patient and competent. They even emailed docs to me when I needed them ASAP. It's been terrific.

Then I met with the nephrologist's assistant -- thus began my first reciting of the medical history and physical exam.

Then I met with the nephrologist. She knows me so not much history required. She talked about how I'm getting worked up early so I can go directly to a live donor transplant. The latest medical research encourages this approach -- no more dialysis if you can avoid it.

Then I met with the surgeon. Another physical exam. But first, he allowed me to ask my many, many questions. He seemed amused. I had investigated all I could (I'm a librarian, after all) about the drugs that are used to keep the transplanted kidney from rejecting. That's most important to me because I know I'll have to take the drugs for the rest of my life. I have a lot of information I want to share about these drugs, but I'll write a specific entry later. The transplant coordinator told me later than she's never seen the surgeon spend as much time with any other patient. He was very reassuring. He talked about how the risks of diabetes or other complications related to the immunosuppressant drugs are much less for younger, healthier, PKD transplant patients. He also showed me where the incision would be -- in my lower groin. I was relieved that the incision is low enough to still reasonably wear a 2-piece swimsuit. I know that sounds trivial, but I don't want to be disfigured. I know life will change, but the fewer changes the better -- and changing my swimsuit habits would be a change.

Then I met with a nutritionist. I was so surprised when I scheduled the appointment and they told me that I would meet with a nutritionist. That seems like a very progressive medical approach. Usually, physicians don't talk about nutrition at all. Even my nephrologist didn't volunteer info about nutritional habits and the impact on kidney failure -- I had to specifically ask. When I did, she only talked about caffeine, but as it turns out, there is a lot of information concerning the benefits of a low protein diet for kidney failure patients. I want to share with you what I found. Basically, the nutritionist recommended that I cut back on sodium, protein, potassium and phosphorus. She gave me some numbers to shoot for, as well, but I have found much more extreme estimates in the medical literature. For instance, the nutritionist recommended I cut my protein to 40-50 grams per day, but some of the medical studies that have been conducted cut their patients back to as little .3 g of protein per kg of body weight per day. That's about 20 grams of protein for a 150lb person. That's very, very difficult to do and some of the studies actually give amino acid (the building blocks of proteins) supplements to the patients while they are on the low protein diets (in addition to other supplements like calcium carbonate - which I'm not taking.)

Check the new feature in the right-hand column. I compiled a list of the references I gathered concerning low-protein diets that might influence renal health. There is a Cochrane Library review article on this topic. In case you aren't familiar with Cochrane reviews, they are systematic reviews, authoritative, scholarly and recognised by medical professionals and the academic community as the "gold standard in evidence-based health care." You will want to locate this article at your local library (if they don't have access to Cochrane Library reviews, they can order it for you from another library), but here is one significant portion:

"Updating two previous meta-analyses...this review shows that reducing the protein intake of patients with chronic kidney disease significantly reduces the number of patients entering end-stage renal disease by about 30%..." The citation to this review article is available in the list of articles on the right.

Then I had to give a boatload of blood, get a chest x-ray, give a urine sample, and get a skin test for a couple of immunizations. Later, I have to get a pap smear, dental check-up, abdominal ultrasound, cardio ultrasound, hepatitis vaccinations, an additional blood test (another tube for blood typing) and I'll meet with a social worker.

THE GOOD NEWS:

-My creatinine went down 2 tenths between March 9th and April 6th. I'm now at a 3.9. This is NOT due to my new low protein diet because I didn't begin the diet until April 7th.

-I am blood type B. Too bad. I hoped to be AB since AB can accept donations from A, B, O or AB blood typed donors. Hopefully, my husband has either type B or type O blood.