My diagnosis

Due to the question asked by Jennifer, I thought it would be better to give the information as a post rather than a quick comment. I am not a person of few words. LOL I got my diagnosis 25 years ago. Two or three years earlier my sister had an episode with her potassium out of balance and got really sick. That promoted tests that discovered her PKD. She was told to alert her siblings as it was hereditary. I was tested and told I didn't have it. They did say signs of PKD usually presents itself by your mid-thirties. So I was tested again at 35 by another doctor. He said that if I didn't have it when first tested, I must have a very fast type. He did, however, say he'd like to see the X-rays if they were available. (IVP was used) I took them to him and he stuck them in his viewer. "Oh yes", he immediately said. "You had it then, see right there." And he proceeded to show me what I was looking at and it was very apparent.

Of course, there was nothing to do but wait and watch. I had no outward symptoms for several years, but high blood pressure finally showed itself. I took medication that worked fine for a number of years. Eventually it did lose its effectiveness and it took over a year before a combination was found that worked for me. During that time I had some problems that were caused by the pkd; gout, shingles (in my left palm!), one cyst bleed, things like that. Then the function started to decrease. I guess it was always decreasing but I wasn't told that. This all happened really slowly. When I got to 15-20% function they began to watch the numbers closely. They said when I reached 10% that I would have to go on dialysis.

People always ask me if I began to feel worse. The answer is no. I never could tell by my feelings that my health was any different. So it was kind of easy to ignore the facts until I had to do something. After continued urging by my nephrologist I had an AV fistula done in Sept. of 2006. I didn't go on dialysis until May of 2007, so the fistula was ready. In Dec. of 2006 I started testing at Vanderbilt Hospital for a transplant evaluation. My overall health was good and they said I'm an excellent candidate for a transplant and I'm now on the list. I have no prospects for a live donor so it may be a long wait, if at all.

Well, that's a little more than just the diagnosis so I'll stop here. I'll gladly answer any questions anyone has. Please feel free to ask anything you want to know. BTW, Jennifer, how did you find my site?

~Later