Our whole family is polycystic

[IrishGirl]

Yikes. We have just discovered that we are a family of polycystic kidney disease. My dad died at 38 of
kidney disease and that was all we knew. Now us 3 kids, ages 46,48, and 50 are finding out its hereditary. Both my sister and brother are ready for dialysis, having just discovered they have less then 10 % of their kidney function....I am the youngest and have yet to be diagnosed. I have my kidney tests done this week but have had the high Blood Pressure since my 20's. The bad news is, all their kids now have a 50-50 chance of having it too. This really bites because that prevents them from getting a transplant from their kids. This is horrible, nasty, bad, life-changing stuff. Back in the day, my mom says they did not think my dad had a hereditary kind....but obviously he did. It really has thrown our whole family for a loop. My brother refuses a transplant right now but has no idea what he is in for with dialysis I think. I am a nurse so I know. But I have no idea how to help either of them. I keep telling him he can eat what he wants and have a normal life if he gets a kidney from me, (if I dont have the disease) or from my mom. He refuses to take a kidney from  his kids even if they are clear. He is so tired now, he can barely do anything but sleep. Its really awful stuff. I am sad but glad to find a spot to get any advice.

[MyssAnne]

Hello, IrishGirl!   What a rude shock for your family!!  I so hope you can answers here, if not, perhaps consolation that we know what you are going through

Welcome aboard!

[willieandwinnie]

IrishGirl. I am so sorry you have received horrible news. That really sucks . I glad you have found us. We are a great caring group of people. Take care and keep posting.

[paris]

  I am so glad you found us.  What an emotional time for all of you.  Your brother may change his mind about the transplant.  It takes awhile to get over the shock and to start making the major decisions.  Tell him about us - there is so much information and support here.  Many have paved the way for him and can help him walk this bumpy path.  Let us know how your tests turn out.   I am sorry you have all had to deal with this.   

[Meinuk]

Hello Irish Girl.

You are amongst family here - literally, PKD is genetic, and a lot of us have it.  Me for one.

Welcome to IHD!

[twirl]

and I passed this on to my children
both my daughters have it
and we do not know about my son
none of the fertility specialsit said anything about it and I always told them I had PDK
my grandfather( first generation in America from Germany)
my mother
myself (not my twin or my older sister)
my two daughters

[kidney4traci]

We welcome you here, there are great threads to review about dialysis and transplant too.  Sorry to hear about the upset, it really sounds like your family has had a time of it lately.  Have faith it will all work itself out.  Look forward to seeing you around...   from Texas...


EDITED: Corrected Icon Error - Bajanne, Moderator

[boxman55]

Welcome to IHD. Sorry to hear about your family history. Please make sure your brother starts dialysis soon it sounds like he is ready too.

Boxman, Moderator

[okarol]

Hi Irish Girl,
We didn't find out until we were in our 30's that my dad had PKD - we just knew he died at 28 from a cerebral hemorrhage (turns out related to high BP for years due to PKD) - my two sisters and my brother all have it, (it missed me but my daughter had unrelated kidney failure). So now we are in our 50's and my siblings are all ok so far (controlling their BP.) It's tough on families. I am glad you're here, there is lots of support and good info on this forum. Welcome!


okarol/admin

[Romona]

 

[keefer51]

 

[Ang]

hey  irish  girl

i  was  diagnosed  with  pkd  some  12  years  ago,  dialysis  18  months  ago.

got  pkd  off  my  mum,  she  passed  on  when  i  was  about  14  months  old

want  to  get  my  8  year  old  daughter  tested  by  have  been  told  it  doesn't  generally  raise  it's  head  till  about  17-20  years  of  age.

i  wish  you  luck  with  it.

[mysty]

 

[KR Cincy]

I know it's all head spinning now...but be as patient as you can and learn all you can...and know that we are all here to help out if we can.

[kellyt]

      Sorry to hear your news, but so glad you found this site!  My advice is to check-in often, read and ask questions.  Help is on the way!

[Sluff]

Sorry I didn't welcome you sooner Irishgirl, but Welcome to IHD.

I really enjoyed reading your introduction, right from the heart, straight talk, and it was really easy to relate with. Although we can't live in a bubble, it sure is good to know at a young age, what you need to watch out for when it comes to hereditary type health issues. I hope you read a lot here because there is a lot to learn and post often if you have questions just ask. Our members are the best when it comes to straight out honest reliable answers.

Sluff/Admin

[IrishGirl]

This place is awesome and I thank everyone who has been so kind and so welcoming. Its totally
the most informative site I have entered and I really appreciate everyone willing to share with me. My brother and his wife went to a dialysis center yesterday and got a real eye opener. They are getting set up for inhome Peritoneal dialysis and now discussing transplant, she wants to donate. I have a new dilemma, if I am found to be free of the disease whom do I donate to..? I have a sister and a brother and both need a kidney. My husband has offered to donate to one as well....its really odd that we are all talking about sharing kidneys all of a sudden. Again, thanks for all the advice, I am finding my way around the site and really learning! IrishGirl

[st789]

Learn as much as possible about dialysis and transplant.

[kitkatz]

Oh Geez! The entire family?  You will be wanting lots of information and advice.  You have come to the right place! I welcome to the IHD.com family.



Kitkatz,moderator

[LadyStardust89]

this wouldn't work out in my family.. everyone is always trying to prove who's "sicker" .. and no real support.. It's always nice to talk to someone who has experienced similar things and doesn't judge or compare.. my family has a history of high bp,diabetes and sleep apnea..

It's why I like forums like these.. support without "well I have this and that so don't complain!"

[ndl0520]

Hey Irishgirl,

I'm sorry to hear that your whole family has PKD.  Your not the only family that is going thru this.  My whole family has it too.  I started dialysis three months ago, my youngest brother started dialysis a year ago, my mom has started dialysis almost six yrs. ago & my oldest brother is still hanging on.  His kidney is still functioning just alittle below 40%.   So, I totally understand how you are feeling.  It's definitely a bummer when you hear that news for the first time that you have PKD.  Just hang in there girl.  I you ever need to talk to someone, just let me know.  I'll make myself available to you just like everyone else here.  Just pm me and I'll give you ways you could contact me.   Take care!