A few months ago, my family found out that my husband has PKD. A little of his back story: He had kidney cancer as a child and lost one kidney as a result. The cancer, called Wilms Tumor, affects about 5% of our nation's children. I believe the nephrologist said that about 1 in 2000 people have ADPKD. But he then said that for my husband to have both in his lifetime is damn near unheard of (you could even put a rough estimate of 1 in 500,000 people having both in their lifetime). You would think since both diseases affect the kidneys that they could be related somehow, but the doctor said they are separate entirely. So trying to bring you back up to current times...
My husband has PKD, and he only has one kidney. His creatinine level was 2.5 when last checked. The doctor said that with two kidneys, someone could possibly live for a very long time without having to go into dialysis or having a transplant. But with him only having one kidney, my husband has been given the rough estimate of 5-10 years for complete kidney failure. He has to go in every three months for a year to a year and a half to have his blood checked and then have an appointment to see where he stands. Our first official appointment is at the end of May. If his creatinine levels rise faster, he is closer to 5 years, if slower then closer to 10 years.
I've read that many people who are put on a transplant list wait at least two years for a kidney, if not more. My husband has not been put on a list yet. I will be asking about that in May. My concern is that if he isn't on the list yet, and his time seems more like 5 years, will he get a transplant in time?
I guess I'm not totally sure why I'm writing here.. an outlet maybe.. I will eventually be going through and checking out other people's stories...
If anyone has any advice for the spouse of someone with PKD, any advice in anything is welcome. I'd love to know what kind of questions to ask the doctor when we go in May. I want to have a list ready. He said he would sit down with us and answer absolutely any questions we had. But I am not entirely sure what to ask. I have a couple in mind, but I'm sure there are things I haven't even thought of.
Thanks for listening.
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