Has anyone had Removal of 1 kidney. Being Prepped for dialysis
YasmeenKa month ago
My mum has just been told that she needs to have one kidney taken out and is soon to be prepped for dialysis which will be 3x a week. They ...
Due to see a genetics councilor on the 6th October. Feeling scared and confused.
PurpleButterfly81a month ago
Hi I'm new here. I'll start with some background and I apologise as this may be long winded.
I came into contact with my long lost father 2yr...
Puzzled part of my PKD
Tonypkd2 months ago
I'm 48 years old my grandfather and my aunt died from PKD my mom's hat and my mom has it and I'm a heavy equipment operator I get real nause...
Recently discovered cysts on kidneys and liver during CAT scan for fibroids.
Veryworried412 months ago
Hi all during a recent CAt scan to check for fibroids.The doctors discovered that I had a lot of cysts literally all over my kidneys and som...
Mother of 2 PKD babes
Taylorpaige942 months ago
My daughter was diagnosed at 2 months old, and my son was diagnosed in utero. Their father was recently diagnosed as well, and his mothers s...
Facebook PKD group
arap882 months ago
Good evening.. as I am newly diagnosed , I read many of you mentioning the pkd charity Facebook group. I then requested to enter the Faceboo...
Porphyrogennetos2 months ago
one question: my nephro, when I asked him during my last audience about my high uric acid levels (9.7, were over 10 at some poi...
Just diagnosed and scared...
I am newly diagnosed with pkd (3 days ago) under an ultrasound that I have decided to do as my dad and grandad passed away from this (49 ...
loulialouly2 months ago
Hi everyone , I am new here. I wish the best , good heath and recovery for everyone. I'm glad to be here and honored. I need to know some in...
Hiding my pkd
AudraB3 months ago
Hi I am Audra. I was diagnosed with ADPKD in 2013.I've tried to ignore or pretend I'm fine but I can't Amy more with severe headaches, confu...
scaredmom3 months ago
My daughter has been offered to participate in clinical study for pkd. Looking for any thought or cons to her doing this.
TJV1233 months ago
Hi, My mother passed away from PLD at the age of 63. She was 4'11" AND 110 pounds. The last year before passing away she looked 7 months pre...
AlonzoMom5 months ago
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...
JDelve5 months ago
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...
Not a Death Sentence!
JDelve6 months ago
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...
8 Replies3 Likes
Daughter just diagnosed at 20, should we have genetic testing done?
scaredmom8 months ago
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...
18 Replies2 Likes
____paru10 months ago
Technology is so advanced then why there is no medicine for this disease.Don't know what to do?Feeling depressed.
Stage 4 PKD
Blessed7410 months ago
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 ...
8 Replies1 Like
PKD and brain aneurysms
tillymint16a year ago
Hi I'm looking for anyone with this kidney disease and also brain aneurysms connected with this condition. I have both these conditions and ...
Does one need to pay for Tolvaptan?
v4seema year ago
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...
JanWellcomea year ago
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...
debbie12345a year ago
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...
shazossie61a year agoPOPULAR
Hello everyone I've only just joined this group... I found it by accident when researching information for "Normal Kidney Cyst" which I was ...
Journey is not easy!
munmun0506a year ago
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...
2 Replies1 Like
Should I be checked?
Joseph_a year ago
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...
Is there any new cure or remedies out there ?
poko21a year ago
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...
Image Guided Biopsy of Kidney
alnovcaa year ago
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...
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shawry2 years ago
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...
PKD diagnosed at 6 years of age
Niamh612 years ago
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...
newly told got pkd
Hidden2 years ago
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...
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