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>>I went in to be a donor for my dad 13 years ago and >found out that I also had PKD @ 26 years old. I didn't >have health insurance and have never had health >insurance again. It has made me suffer in poverty, >living hand to mouth because of other joint disorders >that i ended up having to deal with without >healthcare. I work 6-7 days a week as a massage >therapist caring for others, though i am in chronic >pain and I have had to go without needed surgery to >just dealing with the flu. Thank god for acupuncture >and chinese medicine or i would have nothing at all. >Make sure you get things lined up because I have no >idea how I will cope when things get worse! Until we >fix our healthcare in this country there are thousands >of people just like me who work every day with no >help- because you don't qualify for anything if you >work!! Go USA! >Disgusted in Austin > >Hello, >> >>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. >> >>Thank you for any input.
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