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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  • indagator

    Fertility Drugs and PKD

    2
    Hello All,I'm hoping to find out if anyone has experience with the various drugs used to stimulate egg production in IVF/PGD.I was diagnosed with PKD at 19 when I noticed unexplained high blood pressure, and have a very positive (almost 100%) family history. After previous experience watching family go through kidney failure and transplant, I have decided that I will definitely not be passing on...
  • Donna2017

    Little moan

    7
    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...
  • Mewty

    How to support someone with PKD

    2
    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...
  • PKDIL

    Blood pressure meds?

    2
    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...
  • deleted_user

    Disability

    I am wondering if anyone has disability benefits with pkd pre total kidney failure, and dialysis. I'm seeing my renal Dr Monday and will be asking him about it. My pkd affects my ability to work considering the pain and new problems arising due to the disease. Also, if disability is an option, how does a person get some type of income while waiting for approval? Thanks for any input anyone may...
  • ILikeBacon

    Cramping near ESRD

    9
    Hi everyone..  Do any of you have muscle cramping as you approach(ed) Stage 5?  I'm probably at around 13-14 GFR now, and am starting to get some recurring cramping - especially feet and ankle areas.  It's not chronic, but starting to be more than just a fluke cramp here or there I think.  Just wondering if this is something that is common.Thanks,Steve
  • BLESSED74

    Confused

    4
    Hi I'm 42 years old and have pkd. I got diagnosed 3 years ago and recently my GFR fluctuates between 13-20%. Does anyone else have this problem?? It dropped and they had me get a fistula placed for dialysis. Now it's back to 19% and my Dr is questioning my symptoms. I am exhausted and have vomiting/nausea. Some days seems a little better than others. I really have no energy for nothing.  Now I'm...
  • lilybell

    teen with PKD

    5
    hi, I am 16 and was diagnosed with PKD 3 years ago. I've always had mixed feelings about my diagnosis. On the one hand, i have seen what several of my family members have had to go through with dialysis and transplants. However it doesn't feel real because I have no symptoms. I had an ultrasound recently, and seeing the cysts on screen was hard to experience. I joined this group because I wanted...
  • 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...
  • 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...