Hello everyone,
I am 29 years old, diagnosed 3 years ago by accident, during a stomach ultrasound, but somehow I blocked it after the nephrologist told me it was all good, I literally forgot about about it, I had a couple cysts on my kidney and one in my liver. I didn't google it back then. Recently, I moved countries, saw a new GP who seemed concerned, got a new ultrasound, and there are lots of cysts on both my kidneys. My eGFR is still good, but I have pre hypertension. I have been ready about it for a week non-stop and I have been having anxiety and panic attacks. I can't sleep, I have sweaty palms all the time.. i am so scared since there is not family history😞😞, I feel guilty for my husband, I don't know what is going to happen down the road, how do you guys cope? Any ideas?
PKD has a really slow progression try not to worry about it just get in with your life, limit alcohol and salt but apart from that forget about it. I was diagnosed in 2007 by accident as well, no family history I’m the only one with it. I’m now 44 only just start on BP tablets I have lots of cyst on kidney and liver but I don’t feel Ill and wouldn’t know if not for scans. Doctors sometimes have a habit of making things sound too bleak. When I was disagnosed I thought I was at deaths door they way they made it sound but 10 years on still feel healthy pretty much. So just have your annual check ups and forget about it in between that’s my advice.
Thanks so much for your message, it is very encouraging. How do you cope with the annual check ups coming up?
I actually have my annual check up on Thursday! I usually try to write down anything I want to ask in advance as when I get in the room my mind goes blank. I generally keep things basic I’m just interested in knowing if the kidney function is still ok and whether there is any immediate issues and whether I need to do anything such as change BP tablets. Or whether there are any clinical trials I might be eligible for. I tend not to ask how much it has declined because i don’t find the information of any use other than causing worry which is to be avoided due to hypertension. The only time I really think about PKD is in the days before and immediately after my appointment. Try not to worry too much.
Thanks again for the valuable advice, given my obsessive nature I think I won't ask about the eGFR values or anything like that, I will just hear it from the Dr. Please let me know how your appointment went!. I have also written a long list of questions for the Dr. Thanks! and Happy new year
Dear 123432, thank you so much for your message and encouragement. I will do the low salt, low alcohol thing. I will also try to forget the in between. Thank you!!