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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  • PKDIL

    Found out 2 months ago... =(

    4
    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...
  • sadsomeone

    I'm dead scared of cerebral aneurysms

    8
    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.
  • Truman

    Kidney stone and enlarged kidney pain

    3
    hello!  I am new to the group. I am 48 years old. I've been suffering from severe kidney and stone pain for years. I have to take narcotics to manage. Is there anyone out there like me?  Thank you!
  • Optimistic

    Help

    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?
  • pkdpatient8

    Calcium Channel Blockers...

    1
    How many are on Calcium Channel Blockers?  I have just added Diltiazem to Lisinopril, but I have been reading that CCB's should possibly be avoided.  
  • kendra

    Hi friend. I'm new and have a few questions

    2
    hi friends. I've had this condition a long time and forgotten about it. No issues from it yet aside from oversized kidneys and many cysts for my age. Im a bit worried about my past at university. what are the effects of drinking and occasional recreational drug usage? I don't do that now but what about in the past? What contributes to cyst development?  Thanks so much. 
  • Henry9315

    Positive News

    8
    I am pretty new on here and been reading the older posts. Someone said that the news of PKD is always so grim. It got me thinking.... Most people blog the "bad" stuff because they are looking for information. Well here is some hopeful info.Like the case of my dad. He found out about his PKD when I was told of mine. At the age of 62 he lost his kidney functions. He is now 81. PKD and Kidney...
  • 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.
  • lovemyfive

    I'm completely lost in this new place. :(

    5
    This is frustrating!
  • armstrong

    Kidneys?

    2
    I had campylobacter (food poisoning) 2 months ago and had to have a weeks course of antibiotics (Erythromycin). The diarrhea eventually stopped but i have gradually got worse with left back pain/ache, sweating, feeling clammy, muscle spasms etc. I went to Drs yesterday and she tested my urine and there were traces of blood in it so she sent it to be tested and took my bloods for kidney function....
  • Happy Thanksgiving! We need to speak to patients of ADPKD for 35 minutes via telephone - pays $75.00!If you are interested, please sign up at http://kidneydisease.getpaidmedical.com. Thank you!Jenn PinedaRecruitmentFocus Insite, a member of the Market Research Association
  • Henry9315

    New to Group

    I am a second generation PKD. Gene mutated with my father. It has been passed on to both my children. After knowing I was positive for the last 30 years I finally decided it was time to join a group because I found that the ordinary specialists doctors do not know the in’s and out’s of the disease.  I’ve had one specialist admit that I knew more about PKD than he did.  Hope to be a...
  • Henry9315

    Anyone on the Tolvaptan study?

    8
    Would like to know if anyone else is on the study to compare notes.Thanks.
  • Looking for people who suffer from Kidney Disease, or ADPKD and promoting a PAID telephone study.If you are interested please visit this link: http://kidneydisease.getpaidmedical.com or email jim@focusiniste.com for more information.
  • najia

    Marijuana oil

    2
    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...