Mayo Clinic Connect
Anyone out there have PKD?
my boyfriend has pkd and just had a tube put in his belly for pd. Whats your story?
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Yes, I have PKD – diagnosed in 2000. All my blood work and urine come back with pretty good #’s year after year, but my left kidney is 4 times the size of my right. So I am fortunate that my good kidney is carrying all the weight for both kidneys. I have an okay nephrologist and I am on the search for a new one that will be more instrumental in helping. I feel fortunate that I have successful kidney function with my good kidney, although my last scan showed cyst in my pancrease and liver. I guess we’ll have to follow them and see how it goes. I have sporatic pain and sometimes look like I could deliver at any minute but otherwise I have done very well.
Liked by huffman1835
What area are you in??
Hi! I have esrd, my docs are at mayo, havent transplanted yet. I have searched for good docs.I see docs in Rochester MN, Tulsa, OK – Wichita, KS and Jacksonville, FL–I could recommend one any of these places- well not so much Jacksonville, yet. 🙂
Good luck! I had a transplant,6 months ago!!!!
At Mayo? How are you? Labs good? I have this phobia growing about all the meds. I take 19 pills daily right now. I hate it more than anything.
I too have PKD, so did my dad, aunt, grandma and a few cousins. My dad and Aunt both were lucky enough to live long lives after getting transplants. I’m living on dialysis 4 hrs a day three days a week. I hate it and it’s hard with kids because I have no energy. I am getting ready to go to Mayo to see if I can get on the transpalnt list. I understand about all the pills. I take about 17-20 a day too. I have days when I skip all the pills and actually feel better but I know that won’t last long.
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