I am interested in talking to others that have or known someone with polycystic kidney disease. My Grand Mother and Mother died from the disease, I have it and just entered the "chronic kidney disease" stage and my daughter also shows signs of it. Thanks!

Hi Lizabee,
My dad had PKD - he died at age 28 as a result of a cerebral hemmorage - probably due to the high blood pressure he treated sporadically (he never really knew what he had.) My 2 sisters and my brother have PKD (it missed me, but ironically I have a daughter who had a defective bladder and required a kidney transplant this year.) My siblings all control their blood pressure and are all over 45 years old, so they have done okay so far. There are many other people you could discuss PKD with on http://www.ihatedialysis.com. Best of luck to you!
Karol

Hi Lizabee,
My dad had PKD - he died at age 28 as a result of a cerebral hemmorage - probably due to the high blood pressure he treated sporadically (he never really knew what he had.) My 2 sisters and my brother have PKD (it missed me, but ironically I have a daughter who had a defective bladder and required a kidney transplant this year.) My siblings all control their blood pressure and are all over 45 years old, so they have done okay so far. There are many other people you could discuss PKD with on http://www.ihatedialysis.com. Best of luck to you!
Karol

Hi Lizabee,
My dad had PKD - he died at age 28 as a result of a cerebral hemmorage - probably due to the high blood pressure he treated sporadically (he never really knew what he had.) My 2 sisters and my brother have PKD (it missed me, but ironically I have a daughter who had a defective bladder and required a kidney transplant this year.) My siblings all control their blood pressure and are all over 45 years old, so they have done okay so far. There are many other people you could discuss PKD with on http://www.ihatedialysis.com. Best of luck to you!
Karol

My husband had PKD. He was diagnosed with it 12/24/87. With a very strong will and determination, he was able to last until 06/03/05, when his kidney function was so low, and the kidney's were so swollen that they both had to be removed. They weighed a total of 20 pounds. He underwent a tranpslant on 08/10/05. It was the anniversary date that his mother died from the same disease in 1969. You're doing the right thing. Hook-up with everyone you can that can give you information. The biggest problem we had with all of this, was the unknown. We feel that the thing that helped pro-long the transplant was eating right, getting a lot of exercise (we walked everyday 2-4 miles), and keeping the blood pressure under as good control as possible. When the b/p is up, the cyst grow. When the cyst are growing, it causes the B/P to stay up. It's a catch 22. Contact me if there is anything we can help you with.

Thanks for the responses. I just recently started the process to get on the transplant list here in MI. I have several friends and family willing to try and donate, so I pray that one of them is a match so I can bypass the dialysis and waiting. My Mom and Grandma died from it and my 10 year old daughter has the beginning signs of it as well. My BP is about 117/78 and pretty regular. I try very hard to eat right, but I do go out and eat some unhealthy things. That is the hardest thing for me, my friends want to go out and I try not to, but sometimes I do. I am watching my diet a lot more closely now since I started on renagel...which is a whole new thing for me. Thanks again!

i also have pkd it runs in my family , there was ten in my family, and seven of us has pkd ,it was on my mothers side of the family , four girls got it and two of my broters had it they passed away , the four girls got three got a transplant . one passed away , then my yuonger sister is waiting to go on the list . i received my kidney in 1997 ten years now , good luck to you and all your family may god be with you

i also have pkd it runs in my family , there was ten in my family, and seven of us has pkd ,it was on my mothers side of the family , four girls got it and two of my broters had it they passed away , the four girls got three got a transplant . one passed away , then my yuonger sister is waiting to go on the list . i received my kidney in 1997 ten years now , good luck to you and all your family may god be with you

i am 52, have a serum creatin of 3.9 and my gfr is 30. i AM SCARED TO DEATH AS TO WHAT THE FUTURE HOLDS. I am well awar that my kidneys are not going to last a lifetime, but i have no idea what to expect, and do not know a sole who can relate to me and the journey i am about to embark upon. Please tell me what to expect. What will it feel like, how long does it take for kidneys to quit working, will it hurt? Will I be able to keep working? If i just had a glimpse into the future, maybe i could not be so scared...and stop crying (I know that is selfish and ther are people much worse off than me.) Can anyone tell me what to expect? Thank you

I was diagnosed 20 years ago with PKD. I am 57 years young and take things day by day. I try not to worry to much about it and feel that mostly I am healthy. My GFR just came back at 26, guess that's stage 4 (didn't know before what this number meant)
My mother died at age 53 from PKD, so I have out lived her already, and I am planing to be around for a long time.
Good luck.
Rose

Hi. My husband also has PKD. There is an organization devoted to PKD research and education and I have found a lot of valuable information through them. The website is www.pkdcure.org. Many cities have started local chapters and are joining the national Walk for PKD (a fundraising walk) which is always on the third weekend in September. It's nice to speak to others who truly understand and can give specific advice to us. I hope this helps you, too.

Hi. My husband also has PKD. There is an organization devoted to PKD research and education and I have found a lot of valuable information through them. The website is www.pkdcure.org. Many cities have started local chapters and are joining the national Walk for PKD (a fundraising walk) which is always on the third weekend in September. It's nice to speak to others who truly understand and can give specific advice to us. I hope this helps you, too.