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 just all a bit embarrassing. I can't seem to find clothes that hide my belly well enough and I have thin legs which emphasise it more. I guess it would just be nice to hear from some kindred spirits to help me laugh it off.
Hi I'm 42 years old and have pkd. I got diagnosed 3 years ago and recently my GFR fluctuates between 13-20%. Does anyone else have this problem?? It dropped and they had me get a fistula placed for dialysis. Now it's back to 19% and my Dr is questioning my symptoms. I am exhausted and have vomiting/nausea. Some days seems a little better than others. I really have no energy for nothing. Now I'm...
Hi everyone.. Do any of you have muscle cramping as you approach(ed) Stage 5? I'm probably at around 13-14 GFR now, and am starting to get some recurring cramping - especially feet and ankle areas. It's not chronic, but starting to be more than just a fluke cramp here or there I think. Just wondering if this is something that is common.Thanks,Steve
hi, I am 16 and was diagnosed with PKD 3 years ago. I've always had mixed feelings about my diagnosis. On the one hand, i have seen what several of my family members have had to go through with dialysis and transplants. However it doesn't feel real because I have no symptoms. I had an ultrasound recently, and seeing the cysts on screen was hard to experience. I joined this group because I wanted...
Hello all. I'm looking to connect with others for support in helping my husband manage issues around PKD and deteriorating health. We have been lucky to be rather symptom free, but more recently things have started to decline. He found that his function is down to 20% and we are looking at likely needing dialysis or transplant in the next year. Since this time he has felt more fatigued and...