New link for my blog
JDelve13 days ago
If any of you fellow PKDers are interested I have a new link to my blog.
Hope all you anxious and frightened rec...
11 Replies3 Likes
Worried about mum.
alison198114 days ago
My mum and sister both have PKD. I have just been told in the last week that I also have cysts in my kidneys and liver. (I'm gutted because ...
I am still emotionally destroyed after my Dx, any tips?
Theskewer19 days ago
I was diagnosed back in December during and ultrasound for something else. Now I have more information since then. My eGFR is 100, m...
4 Replies1 Like
zlmlm21 days ago
大家好hello everybody 祝大家健康快乐Wish you all healthy and happy 很高兴可以进来I'm glad to come in. 我是钟腊梅 I'm Zhonglamei 我是多囊肾患者I'm a polycystic ki...
ADPKD and enlarged kidneys - newborn
Stan8725 days ago
Hello everyone. I've just become a father and unfortunately our daughter got PKD from my wife so the "bad" 50% have played in our case. My w...
3 Replies1 Like
Is pkd autoimmune disease
LADscapea month ago
It has many common things with other autoimmune diseases such as increased CRP, inflammation, nodule or cysts with clear liquid, gradually i...
Be the first to reply
PKD and Vitamins
DeanSamsona month ago
What's everyone's thoughts on taking a multi vitamin with pkd.
I used to take Centrum and wonder woukd it be ok to take again?
Thanks for r...
Hundreds of cysts & enlarged kidney
Jerseyladua month ago
Hi, I'm new on here. I had an ultrasound around 4 years ago for a hiatus hernia. Sonographer was concerned as there were a 'number of cysts'...
PKD how many types are there?
LADscape2 months ago
I have read that PKD is hereditary. My husband has PKD but nobody else in his family has the condition. They were tested as soon as he was d...
DeanSamson2 months ago
Does pkd have to run in the family none of my parents or grandparents have to condition I have 4 brothers and none have the condition?
Just got my results back from my 4th Mri scan in 4 years. It's said the there has been no significant change in my kidneys and are dischargi...
dhillasam2 months ago
Hi PKDians ,
It's a poem I wrote after pkd
Struggles trains us to learn and survive
And bring life into different vibe
Perils and problems are n...
Be the first to reply1 Like
The link between PKD and brain anerysms
tillymint163 months 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...
123Ange3 months 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
Catherinejohnson19744 months 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...
Theskewer4 months 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...
KA234 months 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 ...
Stronger5 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
Jackieg8886 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...
BROMAN6 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-576 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
YasmeenK7 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.
PurpleButterfly817 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
Tonypkd8 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.
Veryworried418 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...
17 Replies1 Like
Mother of 2 PKD babes
Taylorpaige948 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
arap888 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...
Porphyrogennetos8 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 ...
Start a Community