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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  • Optimistic

    Help

    3
    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?
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  • 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

    6
    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...
  • Chewitt

    New website

    3
    Anyone tried the new DS website? It's going to take some getting used to, if I can even see it with the new almost invisible, pale font. Did anyone else think it needed changing? I think it's OK as it is. I just hope the final version is significantly better than the beta version, which doesn't seem very easy to navigate.
  • marky4321

    I'm lost

    2 weeks ago I had abdominal pain and ended up in the ER. They thought I might have had a kidney stone. 3 hours later they told me I had a disease I've never heard of. They based this on a CT scan. ADPKD. I'm told I inherited it, although no one in my family has it. The doctors kept saying how remarkable it was that I had so many cysts on my kidneys and liver and that I never knew. Here I am, 39...
  • Hello everyone,My kidney function is 100% at this moment, but my blood pressure is on the rise. It was 100/75 two years ago, but now is averaging on 135/85. I want to start taking meds. How easy is it to control blood pressure with this disease? I'm taking real good care of myself, but there's only so much I can do. I need meds.Thank you
  • live2tell

    Is anyone stage 4?

    I know that different people progress at different rates and with different symptoms, however I'm interested in knowing stories of people in stage 4 especially how they felt and how long they stayed in this stage. Along with any things that helped them stay positive during this stressful stage.