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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  • 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?
  • Adez456

    Newly diagnosed

    4
    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.
  • enigmaticloner

    Blood in Urine

    2
    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

    1
    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

    Introduction

    2
    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
  • 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

    8
    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

    Help

    4
    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)

    1
    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...
  • 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

    Pkd

    3
    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
  • kscgs

    IBS

    5
    Does anyone else with PKD and PLD suffer from IBS (irritable bowel syndrome)? My GI Dr thinks the physical and emotional stress of dealing with my PKD/PLD may have triggered this. Trying to control it with diet and fiber but wondering if others have had similar experience and what to do.
  • Chewitt

    Please sign up

    Please sign up to the new group everyone. I'm lonely!
  • kscgs

    Liver cysts and de-roofing

    2
    I am researching options for treatment of PLD and PKD prior to a trip up to the Mayo clinic to see specialists. Wondering if anyone has had liver cysts de-roofed? Did they grow back? Did your liver volume increase over time? What was the recovery like, especially if you also have PKD?