The FastDay Forum

Hi Nikipins, thanks for replying to my post.
Sorry to hear you have not seen any improvements regarding your kidney health, but the weight loss alone has got to have helped your general health and like you said kept you off more meds. Which is always a good thing.
I no longer go for test and have not for the past 4 years, I was in the early stages back then but couldn't bare the yearly updates of how my kidneys were getting slowly worse. My consultant said there is nothing they can do (but monitor the situation) until I become ill. That could be in a few years or in a few decades so I didn't see the point in living with the fear hanging over me. If I become ill I will deal with it then, as there is nothing that can be done before that time (but worry).
Well done on your weight loss and I wish you the best of health. I hope any more tests go well for you and I would be interested to hear any results.
Thanks
Dee

Hi justdee. I can understand your approach. I get frustrated with the constant tests and then all the too-ing and fro-ing from GP, hospital etc. I've actually been on the same meds now for 7 years despite big fluctuations in the amount of proteinuria I have, so wonder what was the point of all those tests and subsequent worry about the results. Thankfully at the moment despite all the protein leaking my kidney function is only mildly impaired so I'll just keep popping the pills. Good luck to you, PKD can be a difficult condition to come to terms with, have your family been tested? I have 2 girls and they will ideally need testing for proteinuria when teenagers but I'm not sure I will get them tested or leave it until they are older and able to make an informed choice for themselves.

Hi Nikipins, I along with my siblings got tested after we lost our mum to PKD 8 years ago. I got the short straw, they advised my siblings to get retested in a few years but they haven't yet. I know if it ever makes me ill it will take over my life until (if I'm lucky enough) I have a kidney transplant. I'm not going to let it take over my life before I have to. As for your girls, I wish I'd not been tested. It's great when you get the all clear but I know I've got a time bomb. My siblings can think maybe they haven't but I know I have. I will not be having my daughter tested although, last year we found out she had a condition that I have read can be linked to PKD, so it doesn't look great.
The good thing is with advances in the medical world there is hope for us all.
Dee