others' experiences when first diagnosed
I'm reaching out to hear what others experienced when they were first diagnosed. I have been having problems with episodic hypertension for a few years now. My bp is typically 80s/40s. During an episode, I get incredibly weak and bp shoots up to 130s/90s. All of my problems started with urine retention that led to self-cathing for a week. Finally, with enough complaining of right kidney pain my provider decided to run some tests. I have blood in my urine, a GFR of 82 (I'm 35), an MRI showing "scattered cysts bilaterally", one hepatic cyst/biliary hamartoma, and a ureter that doesn't opacify. One renal cyst is 8mm the rest 5mm. My provider had no idea what was going on so she referred me to a urologist, who I see Thursday.
I guess I am just wondering if this sounds familiar to anyone. I would love to frolic in the simple cyst region, but it wouldn't explain any of my other symptoms. Thoughts?
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...
Hi all,I wrote here about 6 months ago...i was very anxious and scared , diagnosed with pkd accidently (no symptoms)... my father was a very complicated case , died 2 years ago in 3rd transplant surgery(!). He had very big kidneys and very high blood pressure from young age.I feel better now mentally and Im optimistic.I'm 28.5 recently did an mri , my right kidney looks better than the left...