Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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  • rene

    asking for information

    hello,I know I have pkd1 for a long time... it came very naturally because my father has it. now I am 36 with normal kidney function. I read that 50% of pkd patients will not reach dialysis. does this mostly apply for pkd2 patients? and where the scientist based on and say that? if you have updated information to share with me, please do! what I knew up to now, is that pkd1 patients reach...
  • rene

    PKD1 and pregnancy

    I would like to know if there is any other member with PKD1 that knows that this syndrome is carried to his/her child.What the doctors advised you? What about the child's health....should we visit a specialised doctor? what the geneticists propose/advise in your countries during/before pregnancy? I live in Greece and I would like your opinion....
  • MikeLyons

    Shrinking cysts - accupunture

    Would love to hear some feedback from the group about this:One of my relatives told me she had an ovarian cyst and she tried accupunture. The cyst shrank.I will certainly give it a go. Have any of you tried accupuncture to deal with PKD?
  • Adez456

    Newly diagnosed

    I spent two nights in the emergency room this week to find out that I have a kidney infection, polycystic kidney disease and a mass growing on my right ovary. I am amongt he 10% with no family history of pkd. This is all new and rather scary to me.
  • does anyone else throw up if they eat an entire sandwich? or maybe a full bowl of soup? no matter how heavy or light the meal is, it's like my kidney just pushed on my stomach, which has been causing me to either be absolutely miserable or to just throw up. just wondering if anyone else has experienced this?
  • enigmaticloner

    Blood in Urine

    Once again I've went to the bathroom and find that it's dark red rather than the usual yellow or clear. I'm under the assumption that this has something to do with PKD so I'm asking here. Does anyone else have this same issue? It's been a few different times now that it's happened. It's a bit worrying really.
  • bbaagg

    Going Private

    At the moment I'm taking 2.5mg Rampiril. Whenever I have my blood pressure checked by the hospital or GP it's either excessively high (which they put down to white coat syndrome) or unbelievably low. It's actually not clear if it's the hospital or GP's responsibility to take care of my blood pressure.It seems that I wont be prescribed Tolvapton till I get more diseased.In the meantime I thought...
  • ILikeBacon


    Hello everyone. New DS member here...I've been browsing some of the online resources, and this site has lots of helpful people.I am around 4.0 Creatinine and GFR of 17. Rolling along ok as of now, with not too much pain other than the occasional cyst rupture and twisting/bending pain, so I feel thankful.I'm sure I will have questions, but will help others with any of your questions, too.Steve
  • sadsomeone

    I'm dead scared of cerebral aneurysms

    My mother died from a ruptured brain aneurysm. She had PKD, and I have it too. I had a brain MRI 3.5 years ago that was clean, even tho my kidneys have been ridden with cysts since my late teens. I'm so scared of dying like my mother. How can I cope with this fear? How do you guys do? I'm devestated because my mother passed away young, and I might suffer the same fate.thank you.
  • lyonsmik1

    Another newb

    My story is a lot like Marky4321's in the previous thread. Last weekend I went to the hospital with a stomachache and blood in my urine, and after a battery of tests they said I had PKD. It looks like there are 50-100 small cysts in my kidneys and liver.(Actually I was really happy, because the doctor didn't say I had cancer!)My belly was pretty much straight up and down a few months ago. I'm a...
  • Optimistic


    I was just diagnosed with PKD. I am bumming. I have 3 daughters and fear for their futures as well as my own. Any words of wisdom out there?
  • Coolp

    Newbe & Jinarc (Tolvaptan)

    Im new to this site. I am 24 I was diagnosed with PKD at 14 after years of trying to find out why I was in pain and I am the only one in my entire family to have it needles to say I am in the 10% who have a surprise mutation. That being said I just took part in a study through the mayo clinic so I could find out what type of PKD I have and found out I have PKD1 Truncating Mutation.My Nephrologist...
  • Chewitt

    Where's all the current stuff?

    Everything shown is 9 years old. If people haven't signed up to the new format, are they just dumped? There appears to be nobody else in my support group now. I can't really figure this out.
  • This is frustrating!
  • Vsingh


    I was diagnosed with pkd last year at the age of 47.My GFR is 37 .It's a total head trip, I am coping by trying to be healthy as possible and take things one day at a time.I am thinking about seeking treatment at the Mayo Clinic in Minnesota.Has anyone been ?is it worth the trip ?i am currently being treated at UT Southwest thanks