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FatBoy
@fatboy

Posts: 1
Joined: Jul 27, 2011

PDK

Posted by @fatboy, Jul 27, 2011

Anyone out there have PKD?

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lindyrig
@lindyrig

Posts: 2
Joined: Aug 01, 2011
Posted by @lindyrig, Aug 1, 2011

my boyfriend has pkd and just had a tube put in his belly for pd. Whats your story?


maaron71
@maaron71

Posts: 1
Joined: Aug 03, 2011
Posted by @maaron71, Aug 3, 2011

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


huffman1835
@huffman1835

Posts: 15
Joined: Jul 16, 2011
Posted by @huffman1835, Aug 7, 2011

What area are you in??


huffman1835
@huffman1835

Posts: 15
Joined: Jul 16, 2011
Posted by @huffman1835, Aug 7, 2011

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. 🙂


Peg
@peg

Posts: 1
Joined: Aug 17, 2011
Posted by @peg, Aug 17, 2011

Good luck! I had a transplant,6 months ago!!!!

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huffman1835
@huffman1835

Posts: 15
Joined: Jul 16, 2011
Posted by @huffman1835, Aug 21, 2011

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.


Sumbunnie
@sumbunnie

Posts: 4
Joined: Mar 18, 2012
Posted by @sumbunnie, Mar 18, 2012

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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