I'm a female 14 yr old teenager and was randomly diagnosed with polycystic kidney diease when I was 4 years old when I was having an ultra sound. I did not inherit the disease genetically but through mutation. I have now been visiting hospital once a year and have to get tests done every few months. All I have been told is that this is the disease I have and I currently have 5-10 cysts on each kidney. Some up to 3-4 cm in width. I have done some research on the disease, but I still don't know alot about the disease. I would appreciate if anyone could tell me about how the disease progresses and any treatments because there is currently no cure. Any information about the disease would be appreciated. Thankyou
I'm 41 years old and I first had symptoms of PKD when I was 16, quite a bit older than you were. My problem was high blood pressure. It seems that I too have picked PKD up from a mutation as no one else in my family has it, and I come from a super-big family.
My PKD wasn't diagnosed until I was 21 - when I refused to continue taking blood pressure medication. It seemed abnormal to me that as healthy, young person I should have high blood pressure; I was annoyed that doctors wouldn't test me to find out why. One day I came across an excellent GP who arranged a bunch of tests for me and we found out pretty quickly that I had PKD.
From when I was 21 until I was 38 I had reasonably normal health, I took my medication, avoided too much protein and kept active. I travelled extensively overseas, attended university, had relationships, bought a house, developed an excellent career and did most of the things I had dreamt I might do (I say 'most' because I haven't gotten around to doing everything yet, I'm always adding something new).
When I was 38 my kidney function had dropped to about 50%. It's now at about 20 % and holding.
There is no defined roadmap for this disease and what happens to me may not happen to you (there's a reasonably good chance you may not even develop kidney failure), but the one thing that I think we can all do is be aware of our condition - listen to our doctors, ask questions and do research into the disease and it's complications. You should also learn (if you haven't already) to listen to your body and understand the signs that tell you that you need to rest or drink water or whatever.
Sometime in the next year I'll be having a transplant (hopefully) or beginning dialysis. At times both options are like big, scary monsters holding me down and stopping me, but I know the reality is that whichever happens it's going to make my life better, and longer.
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