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.

1 Online
  • 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?

    Would like to know if anyone else is on the study to compare notes.Thanks.
  • jennifer536740

    New here too.

    Hello everyone,     I am new here too.  I was diagnosed with PKD at age 19, and am currently 33.  My kidney function is still good, but I have a lot of pain and pressure.  Several years ago, my Nephrologist offered to aspirate some of the larger cysts to try to help with the pain.  He told me that the relief is temporary.  That some people have relief for a week, some for a year.  Well,...
  • sbh93

    upj obstruction

    Months ago I went to the ER, convinced I had another hernia. The CAT scan showed no hernia so they sent me home.Soon I have a follow-up with my nephrologist so I called the hospital to make sure they sent the records from the ER visit to him. They had not, and noted that I could print them myself online.I'm quite upset because I realize now that there's things they didn't tell me at the time. I...
  • Truman

    Kidney stone and enlarged kidney pain

    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!
  • norma67

    Huge support group!

    I am not leaving daily strength, but I want all of you to be aware that there is a mammoth support group on FAce book. Coach told us about it and I looked Into it, it is so big that you wouldn't believe it! Thousands of people around the world with mass volumes of support and good information ! This is just another option for you all, beside daily strength, check it out and see for yourselves!...
  • Hi, my cousin is in hospital with internal bleeding, one doctor suggest blood transfusion, the other suggest better no do it if want kidney transplant in future. he has PKD, on the waiting list for kidney transplant, anyone know if blood transfusion has any impact if he want to do kidney transplant in future? thank you.
  • Hi everyone. I am new to this group, 50 years old female with 15 years PKD history. I had been taken Diovan 160mg daily to control my blood pressure. Recently my blood pressure goes up and my doctor add 12.5mg Hydrochlorothiazide(a kind of diuretic) daily to bring my blood pressure down. My cousin also had PKD and her doctor told her for PKD patient, should not use diuretic. I am not sure if i...
  • mford40

    De-roofing surgery

    Hello,I have had two aspirations done. They work for a short time relief. I am currently scheduled to have the de-roofing done. Has anyone had this procedure done? Wondering what time out of work was and how you felt after..
  • rene

    PKD1 and pregnancy

    I would like to know if there is any other member with PKD1 that knows that this syndrome is carried to his/her child.What the doctors advised you? What about the child's health....should we visit a specialised doctor? what the geneticists propose/advise in your countries during/before pregnancy? I live in Greece and I would like your opinion....
  • 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.
  • sandeep01

    Hello my family

    Hello guys,      Hope you all going great. Here is my story.Am Sandeep and am 31, recently in routine blood checks my creatinine was 2.6 and when I went to doctor he did some ultra sound tests and said am having ADPKD(that's from my grand father)pkd1 and kidney sizes are.RK 196x99 mm LK 206x95 mm(doctor said they been enlarged).never in life I left any pain.From that day I am reading articles...
  • ILikeBacon


    Hello everyone.  New DS member here...I've been browsing some of the online resources, and this site has lots of helpful people.I am around 4.0 Creatinine and GFR of 17.  Rolling along ok as of now, with not too much pain other than the occasional cyst rupture and twisting/bending pain, so I feel thankful.I'm sure I will have questions, but will help others with any of your questions, too.Steve
  • rene

    asking for information

    hello,I know I have pkd1 for a long time... it came very naturally because my father has it. now I am 36 with normal kidney function. I read that 50% of pkd patients will not reach dialysis. does this mostly apply for pkd2 patients? and where the scientist based on and say that? if you have updated information to share with me, please do! what I knew up to now, is that pkd1 patients reach...
  • MikeLyons

    Shrinking cysts - accupunture

    Would love to hear some feedback from the group about this:One of my relatives told me she had an ovarian cyst and she tried accupunture. The cyst shrank.I will certainly give it a go. Have any of you tried accupuncture to deal with PKD?