Let's talk PKD!

[Des]

I am trying to research PKD.

How many in your family has it? (males and females)
How many ended up with ESRD?
Did you worry about having kids? Did all your kids get it.?
How many people has it? (trying to get a count)
What age did you start to get renal replacement treatments?

Did they remove your kidneys before you had a transplant? 

I think here in South Africa there is no support for PKD. Most people (not docs) are not even aware that it is a disease. 








EDITED:Moved to general discussion area-kitkatz,Moderator

[Des]

I have it ..... (female)
Do not  know if my kids have it.... not tested them yet.

[okarol]

Just so you know, my daughter has renal failure, but unrelated to our family history of PKD.
You might want to read this other thread The mystery of PKD - Polycystic Kidney Disease http://ihatedialysis.com/forum/index.php?topic=8760.0


How many in your family has it? (3 males and 2 females, so far)
How many ended up with ESRD? (Dad died from brain hemmorage at 28 yrs old caused by PKD)
Did you worry about having kids? Did all your kids get it.? (I don't have it but my sisters and brother do. They have not had their kids tested except my brother's son has enlarged kidneys at 13 years old)
How many people has it? (trying to get a count) (Not sure what you're looking for here)
What age did you start to get renal replacement treatments? (All are controlling their BP, none are in advanced stages yet)

Did they remove your kidneys before you had a transplant? (none have in my family - transplant or removal)

[staceyand joe92]

I am the first one in our family to have PKD that we are aware of...however my grandfather always had kidney infections but died of heart failure.

I had genetic testing before I became pregnant and found out  I had a 50/50 chance of passing the disease on.  I wanted a child terribly at that time and thought maybe medical research and a cure would catch up with me. One of my two daughters has PKD. She is 16 with no complications at this time.

My kidneys began to fail in 2008 (Aug). I still have some function but have been on dialysis since Aug 17, 2008. 

The transplant surgeon in Phoenix suggested I leave my kidneys alone and not have them removed due to complications. I do not have pain or infections at this time and he thought it best to let them remain after I get a transplant.   

[pdpatty]

How many in your family has it? (males and females)
My father probably had it but he died from bladder cancer
Hiis sister had it but was not given any treatment as she also had lung cancer and died from that Both her daughters have it.
My younger brother says he has it,is not receiving  treatment thought
My younger sister has a few cysts ,hope it never gets worse.



How many ended up with ESRD? Evidently I am the only one

Did you worry about having kids? Did all your kids get it.?When I had my children ,we did not know this was in my father's famiily.

How many people has it? (trying to get a count) This site says about 600,000 in US has pkd

http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/

What age did you start to get renal replacement treatments? I started on dialysis 2 years ago at age 62.

Did they remove your kidneys before you had a transplant? 
I have not had a transplant but the transplant coordinator said they may have to remove a kidney if they found it to be extremely large.

[charee]

How many in your family has it? (2 males , 1 female which is me  )
How many ended up with ESRD? me so far
Did you worry about having kids? Did all your kids get it.? yep and yep the 2 males are my kids
How many people has it? (trying to get a count)
What age did you start to get renal replacement treatments? started dialysis at 45 transplant at 47 from my older sister

Did they remove your kidneys before you had a transplant?  no

I think here in South Africa there is no support for PKD. Most people (not docs) are not even aware that it is a disease. 

[idahospud]

there are 5 m and 2f conting me . All of us. Yes I did and she is going in next week to see if shes the 6th one with it It looks like the farts of next week i well start 45

[twirl]

let's don't talk of PKD
I am so sick and tired of PKD

my grandfather on my mom's side
my mom
me ( not my older sister or my twin)
my daughters - Stasie and Misssy and maybe Bubba
Trasie and Scottie - grand kids may have it

sucks big time and I think we are cursed

[Des]

ditto...
I see why you don't want to talk about it......