What is Polycystic Kidney Disease PKD
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (...
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I am 31 years old and my father was diagnosed with this disease at the age of 33 and he now has renal failure at the age of 54.
There is no history of this disease in the family. When I was growing up I always knew dad had something wrong with his kidneys but it never stopped him from being fit and healthy. When I was about 25 I had persistent cystitis and sought medical advice. The GP immediately wanted to test me for PKD. I had a scan which showed that I had a small kidney stone and 2 "simple" cysts on my right kidney. The consultant did not confirm this as being PKD and was happy with everything... so I walked away thinking that all was ok. During this time I met my partner and we decided to have a child. Throughout my pregnancy I had a few problems ie blood pressure and traces of protein I had all the the tests for preeclampsia but all tests came back fine. My blood pressure at the highest was 140/90. Since having my child I have been experiencing some pain in my side mainly the right and I went to doctors and it showed blood in urine and they did some blood tests showing kidney function etc ok. But recently seeing my dad go through hell and back with this disease I am too scared to have a scan because I know that emotionally I won't be able to deal with the outcome. I am a very fit and healthy person and feel that mylife is just starting. I am also planning to get married soon and we love to have another child... do I take the risk if I do have PKD???I have been getting anxious about this and my father thinks I should be tested to be sure. I feel like this is taking over my life already and I haven't got a diagnosis yet! Posted on 06/26/09, 02:06 pm |
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Hey, I know you are scared. Believe me I am too, but not knowing about what is going on is worse than knowing because at least then you can decide what you need to do. I am 25 years old and just recently was brave enough to ask my doctor how I was doing. He wouldn't say unless I asked. I found out that I am in the mid stages of level 4 of PKD. Yes it was frightening but I am better prepared for the future. Its hard but its your choice and when you know how you are doing you will be able to make the right choice. good luck!!! 
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I know all this is frightening. I was devastated when I was diagnosed in my 30s. That's over 20 years ago. My kidney function is compromised, but stable. But one of the things that has given me hope is that my nephrologist got my BP under really strict control, and that may have been the best thing I could have done for myself. The HALT-PKD study is set up to test whether keeping BP under control does slow the progression of PKD. In my case, anecdotally, it seems to be working. If I hadn't pursued the matter while in my 30s, I might not be in as good a position as I am now.
The truth only hurts for a time. Then it makes you stronger.
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