PKD and mental health
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 "foggy." He acknowledges fighting depression due to worry around being able to continue to provide financially while being on dialysis. There is also issue around losing weight to be an appropriate BMI to do a transplant if possible. I have encourgaed him to go to counseling but he stated this will cause him greater anxiety. I feel so helpless in this moment. I can do my best to adjust my spending to ease money fears or support healthy eating, but I know there has to be so much more grief and worry that goes along with this. I fear for him and selfishly for myself. I'm afraid of losing my husband eventually and of losing the version of him that he is now. I struggle myself with mental stability and fear a life without him. Any feedback or support is welcomed. TIA
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, 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...
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