I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: HelloKidney on May 30, 2012, 10:52:48 AM

Title: Hello Out There!
Post by: HelloKidney on May 30, 2012, 10:52:48 AM

Hello -

I was diagnosed with PKD when I was around 5 yrs old. It runs pretty aggressive in my family everyone was in ESRD by their late 30's/middle 40's.

My doc has told me it is time to get a fistula surgery (I decided against peri) and while my family is a great resource to me, I think it is good to get opinions from others as well!

I am really impressed with this forum, and I am looking forward to getting to know everyone!

Denise

Title: Re: Hello Out There!
Post by: MooseMom on May 30, 2012, 11:40:45 AM

There are quite a few members who have PKD, too, and can empathize with your situation.  I'm really glad you found us and hope you will post often.  If there's any questions you may have, please feel free to ask.

Title: Re: Hello Out There!
Post by: Sue on May 30, 2012, 07:50:30 PM

Hi Denise  :waving;

Title: Re: Hello Out There!
Post by: HelloKidney on May 30, 2012, 08:32:53 PM

MooseMom - Thanks for your note, I  already posted my first question. :)

Sue - I like the smiley face!

 

Title: Re: Hello Out There!
Post by: SugarBear on May 30, 2012, 09:34:16 PM

 :welcomesign;

Glad to have you join us!

Nelson

Title: Re: Hello Out There!
Post by: Poppylicious on May 31, 2012, 01:40:39 AM

 :welcomesign; Denise!

Title: Re: Hello Out There!
Post by: conchman on May 31, 2012, 05:00:54 AM

Hi Denise.  I am PKD also.  My dad had it, and my son is confirmed.  I am just turning 50, I have taken pretty good care of myself, don't drink or smoke, and am now about 30%.  How are your levels?  I will be following in your footsteps so it's great to have you onboard...Keep coming back...

 :welcomesign; :bandance; :welcomesign; :bandance;

Title: Re: Hello Out There!
Post by: willowtreewren on May 31, 2012, 05:04:53 AM

Hi, Denise!

 :welcomesign;

As you can see by my information under my post, our family is also stricken by PKD!

My daughter is now in her mid-thirties and expecting her third child. I worry about how that will affect her PKD.

There is much to learn here and also much support.

 :cuddle;

Aleta

Title: Re: Hello Out There!
Post by: lmunchkin on May 31, 2012, 04:36:48 PM

Hi & Welcome Denise!  Lots of great people here.  So glad you found us.

Again welcome & God Bless,
lmunchkin

Title: Re: Hello Out There!
Post by: WishIKnew on May 31, 2012, 04:39:36 PM

 :welcomesign;

Glad you found us!

 :flower; :flower; :flower;

Title: Re: Hello Out There!
Post by: Bajanne on May 31, 2012, 04:45:07 PM

Welcome to our community!  You have made a good choice in joining this group.  This is just the place for information and support.  We are more than a website - we are a genuine family  :grouphug; as you will find out.  Just keep on posting and keep on reading.  We are here for you.




Bajanne, Moderator

Title: Re: Hello Out There!
Post by: Butterfly7 on June 13, 2012, 12:19:39 PM

Hi HelloKidney
I too was diagnosed early with PKD.  I am hopeful to get a transplant in the next few years.
Mom =Johns hopkins   brother = charlotte med center CMC
Good luck to you.

Title: Re: Hello Out There!
Post by: MomoMcSleepy on June 13, 2012, 12:32:57 PM

Hello and welcome!  I'm sorry that genetics have dealt a bad hand to you and your family, but look forward to seeing you on the forum.
 :welcomesign;

Title: Re: Hello Out There!
Post by: Cordelia on June 14, 2012, 06:05:30 PM

Hi HelloKidney,

Welcome to the forum!          :welcomesign;

I have PKD too

Title: Re: Hello Out There!
Post by: Rerun on June 15, 2012, 04:41:13 AM

HelloKidney..... I love that ! 

Welcome!

Rerun, Moderator     :welcomesign;

Title: Re: Hello Out There!
Post by: RichardMEL on June 17, 2012, 01:55:14 AM

G'day Denise and welcome to IHD. I love that you like our forum already - I hope being part of our community can be helpful to you as another non-family perspective on what you're facing.. and somewhere to vent and discuss your concerns.

Welcome again to IHD!

RichardMEL, Moderator

Title: Re: Hello Out There!
Post by: Butterfly7 on April 12, 2017, 08:58:11 AM

Hi there - did you get the Fistula Surgery?
It's not so bad a year in now....the initial scars are healing... Hope you are hanging in there.
Had a CT scan on size of kidneys -since it is PKD, but surgeons at Georgetown and VCU said no reason to remove them just yet -their still 'markedly enlarged' but maybe they will come out after transplant.
Have a great day...

Title: Re: Hello Out There!
Post by: Rerun on April 12, 2017, 12:01:02 PM

This post is old.  2012...  you need to check the date...  You probably won't get a reply.

Title: Re: Hello Out There!
Post by: Charlie B53 on April 18, 2017, 05:28:11 AM

For a minute I thought that I'd somehow missed a new member's first post.  Until I was scrolling down and saw a post from a deceased member.  Then I started looking at the dates and finally got down to the last two recent posts.

I can only Hope that all has gone well.  But this post serves as a reminder how this insidious desease strikes whole family's.

We have so much yet to learn before we can conquer this desease, and one day prevent the damage, to keeping our kidneys functioning well.