CHRONIC POSITIVITY - Life with Polycystic Kidney Disease

I’m continuing to do well. My weight is stable, my blood pressure is still “borderline” today (132/80), no fever, and yesterday I had 2680 cc’s in and 2485 out. My goal for today is to drink at least 3000 cc’s.

My arm continues to hurt. The pain is mainly in the right bicep and down to the inner aspect of my elbow. I also had pain yesterday on the inner aspect of my right lower forearm/wrist. The distribution seems as though it’s nerve related, but the pain is an intense ache, and not that of numbness, tingling and/or burning.

The one thing I left out that I learned about at my appointment is the number of antigens that I matched with my donor. When I was placed on the transplant list, I started getting monthly blood work. This was sent to Hershey Medical Center and held for a month, until the new specimen replaced it. When I was called for a kidney, they would use this blood to match it against the potential donor’s blood. They look at 6 different antigens, as well as other things. I matched 3 out of 6 antigens with my donor, which is OK. The lower the number of matches, the more likely you are to reject, although with today’s immunosuppressant regimens, this is less of an issue.

Also, the Transplant Nurse told me they will be checking me for HIV and Hepatitis in 3 and 6 months, due to the fact that my donor died of a drug overdose. There were conflicting reports between what she told me and what the nurse told me the night he called to offer the kidney. On Monday, I was told that the donor did NOT have a history of IV drug use, but on the initial call I was told that she was an IV drug user. I’m not worried about it.

My surgeon won’t allow me to drive for 6 weeks. The reason being that if I were in an accident, he’s afraid my kidney will be damaged by the steering wheel.

Prior to transplant, I craved milk. Now, I have no interest in drinking any, but I should, because of the low phosphorous. Could it be that my donor didn’t like milk? It just seems so odd….

“Dying Man”  has a great article on living life despite chronic or terminal conditions.

Now that I have a lot of free time, I’m trying to keep myself busy. Yesterday, I cut up strawberries that we bought a few days ago, spent a lot of time surfing blogs, made dinner, and helped Kevin put line on the trimmer (I walked him through it without handling the trimmer very much and I wore a mask; don’t want to breathe in any of those soil pathogens). I also started reading some books I started. Right now it’s The Fountainhead by Ayn Rand. Last night, the 3 of us started watching “Tuesday’s with Morrie”; great movie.