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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  • panda14358

    my unborn baby with pkd

    5
    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...
  • Izasmella

    PKD and mental health

    1
    Hello all.  I'm looking to connect with others for support in helping my husband manage issues around PKD and deteriorating health.  We have been lucky to be rather symptom free, but more recently things have started to decline.  He found that his function is down to 20% and we are looking at likely needing dialysis or transplant in the next year. Since this time he has felt more fatigued and...
  • PKDIL

    Blood pressure meds?

    1
    Hi all,I wrote here about 6 months ago...i was very anxious and scared , diagnosed with pkd accidently (no symptoms)... my father was a very complicated case , died 2 years ago in 3rd transplant surgery(!). He had very big kidneys and very high blood pressure from young age.I feel better now mentally and Im optimistic.I'm 28.5 recently did an mri , my right kidney looks better than the left...
  • VerySad

    Lisinipril and PKD

    2
    My son (29 years old) was diagnosed with PKD about 9 months ago.  His kidney function is fine.  His blood pressure is about 130/80.  His doctor is recommending Lisinipril to control blood pressure and help with cysts.  He is not experiencing any negative affects from PKD at this point.My husband is 67 and found out 9 months ago that he too has PKD.  His kidney function is fine.  He takes...
  • Lady_Colossus

    New to the group

    4
    Hello everyone. I've been living with PKD for a long time. I was diagnosed as a pre teen and remained symptomless until my mid twenties. I'm nearing my mid thirties now and still in stage 1 but the size of my cysts are so debilitating. They just keep getting bigger no matter what I do. It's hard to move, period. :/ Because of my kidney function being so excellent I am just advised by my doctors...
  • Wrigs

    Sports

    3
    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? 
  • tryn2bpositive

    Mental acuity and confusion

    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...
  • feeb

    Expanding ribcage

    9
     I am new to this group. I am a 60-year-old female with PKD and PLD. There are many things are doctors never think to tell us and many things we can only learn from other suffers. Right now, I am concerned about my expanding ribcage. I am petite and short-wasted so crowding is definitely been an issue for me. However, I've never heard anyone complain of their rib cage sticking out and I am...
  • Chilli

    Dizzyness and muscles collapsing

    3
    Had a shower walked to my cupboard and got dizzy muscles started feeling weak on my left side and just collapsed leg started wobbling. Have had pkd for 5 years now do dialisys.  Went to hospital my numbers was high did a dialysis session wasn't feeling much better. Left hospital came back as the wobbly was back.  My white blood cell count was high.Came home with lots of medicine blood pressure...
  • mrscox1017

    Renal Hypertension

    3
    I was diagnosed with PKD about 3 years ago. It was found on a bit of a fluke because my blood pressure jumped pretty quickly (normal in July, then dangerously high in January) and so my doctor ordered tests to find the cause. She had a cat scan done thinking it was an adrenal issue and found the cysts in my kidneys. I initially took Lisinopril (40 mg/ day) which kept my blood pressure in check....
  • MsFur08

    Looking for Ruth (Ihavepkd)

    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,...
  • 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...
  • https://www.google.com.au/amp/www.dailymail.co.uk/health/article-4622666/amp/Green-mamba-venom-treat-kidney-disease.htmlResearchers gave a peptide in the venom to mice with polycyctic kidney diseaseThe disease causes fluid-filled cysts to develop which can damage the kidneys The results revealed that the area made up of cysts was reduced by 47 per cent Current drugs to treat the disease can...
  • 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...