The link between PKD and brain anerysms
tillymint1612 days ago
Finding it difficult to find others who have PKD and brain anerysms that are linked with this disease. I’ve been on the Headway sight but...
123Ange12 days ago
Right told today i need to get started on Tolvaptan. Got the script and now have the drugs.
I was told to start it this weekend so i can gt ...
Pain and pain management
Catherinejohnson197416 days ago
I am 44 and was diagnosed at 30 , my dad has it and has had two transplants with the successful
One holding when I was 19 ..
my pain In my ba...
Theskewera month ago
I have reading about dieting and PKD and I was wondering what everyone recommends. Should I go vegetarian? Alkaline? Vegan? I...
I am having a hard time accepting that I have this, I am so scared
I am 29 years old, diagnosed 3 years ago by accident, during a stomach ultrasound, but somehow I blocked it after the nephrol...
KA23a month ago
Hi, I would really appreciate some help and advice .
A few weeks ago I had a abdominal scan for bloating. The doctor called me last week to ...
Stronger2 months ago
Hi, I'm wondering if anyone out there had a cyst drained and then burned. I had the procedure a week ago...I'm wondering what to expect?
Travel insurance advice
Jackieg8883 months ago
I wonder if anyone has any advice please regarding travel insurance. My son has recently been diagnosed with PKD and we already had al...
BROMAN3 months ago
Hi, this is my first time here, I am 48 years old and I had an aneurysm on 2006; I survive all that. Now I suffer for PKD; I am scared, my m...
Lynn-573 months ago
Hi I'm new to this
I was diagnosed 17 years ago been relatively fit and well apart from an episode of kidney stones 10 years ago. Have been...
Has anyone had Removal of 1 kidney. Being Prepped for dialysis
YasmeenK4 months 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.
PurpleButterfly814 months 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
Tonypkd5 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.
Veryworried415 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
Taylorpaige945 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
arap885 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...
Porphyrogennetos5 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 ...
loulialouly6 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
AudraB6 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...
scaredmom6 months ago
My daughter has been offered to participate in clinical study for pkd. Looking for any thought or cons to her doing this.
TJV1236 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...
AlonzoMom8 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...
JDelve8 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!
JDelve9 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?
scaredmoma year 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
____parua year 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
Blessed74a year 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...
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