Friday, May 20, 2005

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).
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