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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  • Donna2017

    Little moan

    5
    I realise our am lucky only to have PKD. There are a lot of families dealing with worse diseases and illness.  My post is really vain and I feel like a phony posting on here. I am 37, I still have good renal function but my kidneys are quite huge now. Over the past 8 weeks I have been asked on several occasions about when my baby is due. I find people staring at my abdomen quite a lot. It is...
  • stewart

    End Stage Renal Failure

    1
    I have a friend who is 79 years old and was diagnosed with PKD when she was in her 30s. She was diagnosed with kidney failure in one kidney two years go and this past December found herself in the ER with massive swelling and end stage renal failure. She is been having dialysis since just a few days before Christmas 2016. Her overall kidney function was 5% then and is 5% now. Just two weeks ago...
  • Wrigs

    Sports

    2
    Just looking to get others thoughts on this one. I gave up Jiu Jitsu on the advice of a consultant when first diagnosed. Mentioned it at my last check up and the new consultant felt the health benefits of doing it and keeping fit outway the downside whilst kidneys aren't huge (19cm). So gone back but going stready.Any others had conflicting advice regarding activities? 
  • PKDIL

    Found out 2 months ago... =(

    Hi everyone ... i've been diagnosed with PKD by accident two months ago...i had some stomache problems after traveling in 3rd world country... the problems went away but intruduced me to my biggest fear. my father was a very complicated case of PKD , died at 61 on he's 3rd transplant surgery..he was very high BP since 15 years old...  had nephrectomy(huge kidneys),open heart surgeries and what...
  • Mewty

    How to support someone with PKD

    1
    Hello everyone! I'm new here and don't know exactly how these posts work, but I'm here to reach out for advice...I do not have PKD but my boyfriend was diagnosed months ago with "the worst possible case" of this disease...he's been sick for well over a year before he was diagnosed. for all of you who have it..I'm sure you can all sympathize with him. He's 29 years old. His father, aunt, and uncle...
  • MsFur08

    Looking for Ruth (Ihavepkd)

    8
    Hey everyone,I joined this group several years ago when I was first diagnosed. Life went on, I got married, had kids, etc. Over time, I became less active on here as other life circumstances took precendent. Anyway, I can see the forum is vastly different than it was back then. I'm looking for someone who used to be on here, I can tell she's still a member, but don't see any recent activity. So,...
  • nicky73

    My eleven year old son is already symptomatic of A

    1
    My nephrologist suggested me to measure my sons bloddpressure. He has no complains, is very sportive. So I measured him and it turned out to be way too high. We visited the pediatric nephrologist and today we got the results of the 24 hour measure: the pressure is so high that my son must see a cardiologist and ophtalmologist to chevk if there is damage in his organs already. I am really in...
  • tryn2bpositive

    Mental acuity and confusion

    7
    I need to know about other's experiences with mental function as their kidneys decline because yesterday I got so confused, could not think clearly. I dont' take any pain med on a regular basis, generally take hydro morphine when I have significant pain but that is rare, 3 times in last 2 months. Did have anesthesia early May but I'm thinking, based on my recent experience, that along with the...
  • enigmaticloner

    Potassium Citrate

    3
    Does anyone have any experience with this? I was told by my nephrologist that it helps reduce kidney stones. Any side effects you had with it? Did it help you? Anything else to take note of?Thanks.
  • boagsw

    Blood pressure has gone high

    4
    my husband has Polycystic kidneys and has been on dialysis for 4 years, lately his medicated perfect blood pressure has gone high, so he has upped his medicine, like he was told, it's still high and we aren't sure whyI think it could be the cysts have got bigger, we don't see the specialist fir another three weeks, anyone have the same problem?
  • panda14358

    my unborn baby with pkd

    3
    hello im 25 and  we just recently found out my baby has PKD during my 23 weeks ultrasound with no amniotic fluid.Baby's heartbeat and movements are good. Me and my husband's sides doesnt have any history of PKD.Does anyone have the same experience? I am hoping and praying for any chances of survival.Any advice? or treatment to help my baby survive? Hoping someone could respond.Badly needing...
  • sbrewer

    PKD with High Potassium

    2
    Today is Monday, we have an appointment on Thursday to discuss where my husband is with his PKD. So this past Friday he had to draw his blood so we can talk about it during our upcoming appointment. Well, they felt the need to call today with his potassium results. They were asking how is feeling, and they were very worried. His potassium level is a 6.9. Severe levels are at 7. They were acting...
  • Apey

    others' experiences when first diagnosed

    6
    I'm reaching out to hear what others experienced when they were first diagnosed. I have been having problems with episodic hypertension for a few years now. My bp is typically 80s/40s. During an episode, I get incredibly weak and bp shoots up to 130s/90s. All of my problems started with urine retention that led to self-cathing for a week. Finally, with enough complaining of right kidney pain my...
  • nyc10

    Blood in urine

    4
    hi everyone, new to the group. I'm 30 years old and have known I had PKD for a long time. In the past five years I've had a kidney infection, multiple UTIs and one cyst infection that required hospitalization.about 7 days ago I had severe pain in my kidney and stomach regions that went away after two days. Then starting Sunday I noticed that my urine had blood in it. The color is a really light...
  • deleted_user

    Post Kidney Transplant Issues

    4
    I know that this is not a post kidney transplant group but there is not one that I have found on here. Have any of you experienced post kidney transplant issues with prograf? My husband was just transplanted on new year's day and his creatinine keeps rising then falling based on the prograf level. We are worried and keep getting the same discouraging responses from the transplant team. They just...