I suspect I have PKD. I have not confirmed it yet, and I will get to the reasons below.
I am 40. My father has PKD. He is about 58. He received a transplant about 5 years ago. At about 40, he had to have his kidneys removed. He has dealt with infections, low-power, days in the hospital, etc, but is doing well overall.
My father and I were separated for more than 25 years. In 1999, I met him again. I mention this to clarify why I am looking into PKD now. I have only known him for 8 years.
After researching his disease, I determined that I could be affected. So I watched my symptoms and dealt with the worry and such. Once, back in Feb. 4, 2002, my urine was coffee-colored for a day. Then nothing else happened for a long time. It happened again last month. Other symptoms that have occurred sporadically over the years: have had shooting pains that seem to run from my bladder upward into my body; my BP is slightly elevated at about 125/90 or so regularly; I have been unexplicably feverish (hot, achy, low-power) for a day, and seem to get better the next day; I occasionally have feelings of a white hot needle being pushed into my right kidney and also into my right inner hip joint.
Based on what I have learned over the years, my symptoms could be very early. But, my question is not for a diagnosis.
I am concerned about being labeled "high risk". I have heard many stories from co-workers, family, etc, afflicted with various conditions, suddenly finding it difficult to get assistance from insurance and such. The term "pre-existing condition" pops into mind, especially when changing insurance companies. Looking at my father, he was partially supported by his wife's insurance and by public programs (Medicare?)(at least when he was on dialysis).
My question to the forum is, what can I do now, to prepare for my eventual diagnosis, if I turn out to be positive and it's official? What are some of those things that some of you wished you had done early? And, is my caution with merit or am I worrying too much because it is too early and assistance is not so elusive? If my health were to cause me to lose my job, would it be harder to get insurance again?
Just so you understand me, I am a problem-solver by nature, and want to be sure I take the best steps I can. I have somewhat accepted what might happen to my life, and am trying to be ready. However, I don't expect for life to stop --- not at all.
