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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  • sbrewer

    PKD with High Potassium

    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

    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...
  • panda14358

    my unborn baby with pkd

    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...
  • nyc10

    Blood in urine

    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

    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...
  • enigmaticloner


    Hey there, lately I've been feeling pretty fatigued lately and I've been wondering if it can have anything to do with PKD. Often I'll feel quite tired even after sleeping. It causes me to just have to go to sleep in the middle of the afternoon or go to sleep early some days which is getting a bit irritating really. Anyone else here with PKD having this issue? I'm seeing my nephrologist pretty...
  • pkdpatient8


    Anybody on antidepressants?  Which one is okay for PKD pateints to use?  Thanks!
  • babies_r_miracles

    any adults with arpkd doing okay?

    My 3 month old son was born with autosomal recessive polycystic kidney disease. He is doing okay at the moment. I try to find stuff online but it is all so grim. Are there any adults with autosomal recessive polycystic kidney disease who are doing okay? I need a little ray of hope on days I succumb to sadness. 
  • ToughGirl

    Family of PKD patients

    Hello all, I am new to this support group but my family has been dealing with PKD (polycystic Kidney disease) for generations.  Mother, aunts, sister, bothers and even my children were diagonised already.  We are thankful for all the research and clinical trails that the medical community has been working on.  We have seen how this disease is similar and different at times for us all.  At...
  • sbrewer

    Spouse of PKD

    Hello All,A few months ago, my family found out that my husband has PKD. A little of his back story: He had kidney cancer as a child and lost one kidney as a result. The cancer, called Wilms Tumor, affects about 5% of our nation's children. I believe the nephrologist said that about 1 in 2000 people have ADPKD. But he then said that for my husband to have both in his lifetime is damn near unheard...
  • najia

    Marijuana oil

    Hi All! New to the group, I was diagnosed with AKPKD about a year back, my kidney function is pretty normal currently. Hoping to keep it that way for as long as possible! I met with a new doctor today who wants me to start BP medication even though my bp is in the normal range. He also adviced me to start Tolvaptan, I'm a little reluctant since it's still in trial. Just wondering if anyone is...
  • nicky73

    Combined liver and kidney transplant

    Hi guysI am the first in my family with APKD and won the jackpot because my liver is enormous as well. Before pregnancy I had a normal figure but after giving birth my liver started to explode. Now it is 6 times as big as it should be and really impares quality of life. My son is eleven years old now and we just found out that he has hypertension :(I have decided that I will opt for a combined...
  • Tarmstrong

    New to the group

    Hello everyone. I am Travis. I have known about having PKD for around five years or so. I was first told i wouldn't have any worries till I was in my 80's or so. I got admitted to the hospital a year ago due to my kidney disease. Come to find out both of my kidneys are the size of regulation football's. I don't know much about this disease besides what I can figure out online. At first I got all...
  • rhwhitmore2001

    My fiance, his mother and sister have PKD

    My fiance of 9 years told me up front when we got together that him, his sister and his mother have PKD. I've done some fairly extensive research, been to some of his dr. appointments and have utilized other forums to ask about this debilitating disease as well as its many affects on the family and other everyday functions.Within 6 months of our relationship, we found out I was pregnant and...
  • enigmaticloner

    Potassium Citrate

    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.