New to the group
Hello everyone. I've been living with PKD for a long time. I was diagnosed as a pre teen and remained symptomless until my mid twenties. I'm nearing my mid thirties now and still in stage 1 but the size of my cysts are so debilitating. They just keep getting bigger no matter what I do. It's hard to move, period. :/ Because of my kidney function being so excellent I am just advised by my doctors to keep doing what I'm doing: eating as healthy as I can, sticking with the herbal remedies I use along with my medication (lisinopril), and not pushing myself to go beyond my limitations. I also have intractible epilepsy but my seizures have decreased drastically (thankfully!) over the years. There are moments when I just can't take the constant pain, discomfort, nausea, etc. that comes with PKD and that's when I reach out for support. I'm blessed to have a wonderful husband who takes care of me without complaint, is my best friend, and the greatest person I know. He encouraged me to seek others with PKD since my list of friends has dwindled so much over the years. Many don't understand and I feel like those who have stuck around may be be doing so out of guilt. I know everyone who lives with this can relate to how I feel. There are days I feel like an alien, or like a carrier of aliens since my cysts are weird little foreign sacs, walking around in a world I don't belong in because of my illnesses and limitations. I have trouble reminding myself that's not the truth sometimes, even though I like maintaining a positive attitude as best I can. I'm looking forward to connecting with you all. Thanks for reading.
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...