Hi everyone.

I am new here with a baby that was born with PKD am just looking to learn more as I am already learning as my baby grows and the...

Good morning all you lovely PKDers out there! I have a quick question directed at any of those of you who are now on Tolvaptan. My 13 year o...

I just wanted to give you recently diagnosed PKDers some hope and assurance that this is not a Death Sentence! I have it, three of my four s...

Just found out my 20yr old daughter has PKD. We have never heard of this before in either family. I am terrified and dont know what to thi...

Technology is so advanced then why there is no medicine for this disease.Don't know what to do?Feeling depressed.

I am 42 years old been diagnosed with PKD for almost 3 years now. Kidney function is 20%. I went to Dr today but saw his PA. Less just say ...

Hi I'm looking for anyone with this kidney disease and also brain aneurysms connected with this condition. I have both these conditions and ...

Hi,

Just been to see my specialist and as my kidney has started to decline have decided to give Tolvaptan a go. Does anyone know if one needs...

Hi. Just been to see my renal specialist yesterday who is amazing, and she is suggesting that would be a good candidate for Tolvaptan, I'm a...

Hi all My daughter as just been for a scan to see whether she as PKD or not and the results have come back clear. Her Dad and aunties have P...

Hello everyone I've only just joined this group... I found it by accident when researching information for "Normal Kidney Cyst" which I was ...

Hi I m Munmun from India. I m 30 year old. I got diagnosed with Pkd last year. My kidney function is absolutely ok. But how long? After know...

Hi, I'm new here and I have a question. I'm 31 and my grandmother had ADPKD. My mother is now 50 and didn't show any symptoms. Should I be c...

Hi, Im 46 years old and i got PKD and as we know its a genetic condition but recently my GP has revealed i have cysts growing on my liver an...

Hi! I hope I am posting this question in the right group.  I was recently diagnosed with ovarian cancer & I am having surgery tomorrow to re...

I am currently egfr 23, I have constant back pain,tiredness,nausea,loss of appetite and have just had the news that my husband and sister ar...

Hi 

I am posting on behalf of my daughter. Her father has PKD and numerous small cysts were spotted on her kidneys when she had a ultra sound...

ive felt swollen an numb round sides an back for a while gps said it was linked to neck my consultant told me it wasnt so i get gp to send m...

Can the cysts of a PKD patient be removed by an operation? I saw no discussion on this.

Good morning all

I have just come across this article and thought it would be of interest to this group....

nice.org.uk/guidance/ta358

Has anyo...

I have severe pain all in my right back when my bladder is filling up and as it does it makes me "puffed out". I have a small cyst and all ...

Good morning all

I'm finding this website and everybody's posts really interesting and full of useful ideas having been a member for a couple...

hi my husband was diagnosed with pkd a couple of months ago he has 42% kidney function and cysts on his liver,the last week hes been in so m...

I had a kidney removed a year ago & have had no problems until now. My BP was extremely high prior to the nephrectomy but went down afterwar...

I have PKD, 3 cyst altogether. I am getting so tired of this constant, burning pain in back & both the left & right side. I can't take it an...

My left kidney is filled with cysts. I was told one hemmorraged, if I didn't pass the blood in my urine where did it go? I also have them i...

I HAVE PKD NOW I AM CKD STAGE 3 CAN ANY ONE HELP ME ABOUT THIS OR ARE EXPERIENCING IT WAITING FOR CT SCANS MY SYMPTOMS ARE BREATHLESS EXHAUS...

I'm 38year old pkd patient my nephrologist prescribed me toplavan for slowing down the progression of kidney cysts however I'm very scared a...

I don't know how much impact Tolvaptan has made on the size of my kidneys and cysts because I haven't seen the MRI scans since I started but...

I am wondering if having numerous cysts at a young age means she will be severely effected. Her father had an aneurysm at 38 and is now seve...