Hi All! New to the group, I was diagnosed with AKPKD about a year back, my kidney function is pretty normal currently. Hoping to keep it that way for as long as possible! I met with a new doctor today who wants me to start BP medication even though my bp is in the normal range. He also adviced me to start Tolvaptan, I'm a little reluctant since it's still in trial. Just wondering if anyone is doing it and also if anyone has tried marijuana oil to slow down the process. Thanks for sharing!
Just looking to get others thoughts on this one. I gave up Jiu Jitsu on the advice of a consultant when first diagnosed. Mentioned it at my last check up and the new consultant felt the health benefits of doing it and keeping fit outway the downside whilst kidneys aren't huge (19cm). So gone back but going stready.Any others had conflicting advice regarding activities?
I have a friend who is 79 years old and was diagnosed with PKD when she was in her 30s. She was diagnosed with kidney failure in one kidney two years go and this past December found herself in the ER with massive swelling and end stage renal failure. She is been having dialysis since just a few days before Christmas 2016. Her overall kidney function was 5% then and is 5% now. Just two weeks ago...
Hello everyone! I'm new here and don't know exactly how these posts work, but I'm here to reach out for advice...I do not have PKD but my boyfriend was diagnosed months ago with "the worst possible case" of this disease...he's been sick for well over a year before he was diagnosed. for all of you who have it..I'm sure you can all sympathize with him. He's 29 years old. His father, aunt, and uncle...
I realise our am lucky only to have PKD. There are a lot of families dealing with worse diseases and illness. My post is really vain and I feel like a phony posting on here. I am 37, I still have good renal function but my kidneys are quite huge now. Over the past 8 weeks I have been asked on several occasions about when my baby is due. I find people staring at my abdomen quite a lot. It is...