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PKD-Bellevue
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« on: January 14, 2012, 02:22:58 PM »
Hello Everyone,

I have PKD and getting close to dialysis.  I’ve been on the transplant list since May 2010, and the average wait for “O” blood types is 38 months.  I’ve had 5 friends attempt to qualify as living donors, but none of them has worked out to date.  Still hoping someone will make it soon!

Current GFR is 9, but I feel OK, not great, but not ready for D.  I have a fistula ready to go, but I think I’ll give PD a try first.  I weigh ~230, so as my function continues to decline I may need to switch to Hemo to get the clearance.

This website has been great as a reference tool so far.  Now maybe a little moral support as I go forward.  I have a wonderful, loving family but talking to them about how I’m feeling and the decisions I need to make evokes sadness and pain in them.  It will be nice to discuss things with people that have “been there, done that”.  My mother had PKD, and a transplant, but passed away in 2009.

Thanks for providing such a great community!

Brett
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ToddB0130
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« Reply #1 on: January 14, 2012, 02:31:19 PM »
Welcome to the board.  You've come to the right place for information and support.  I am also pre-D and working to stay that way as long as possible.  I too feel pretty good overall (generally my major symptom tends to be tiredness,  but I work full time and socialize regularly with friends and family.  Have had the fistula surgery (three months ago), have my potential center picked out (they have noctural and I'll get to show up, get hooked up and *hopefully* sleep through it) ..... and I got on the transplant list in December 2011 (Happy Holidays !!).  My place (the University of Pennsylvania) says the average wait is 4 to 5 years, so .... time will tell.  One potential living donor, but I'm not pressuring him to get tested, etc (he's 24, with a bit of 'growing up' to do) .... we'll see if that really works out.

Best of luck to you.  I hope you'll find everything you need here.
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No day but today
willowtreewren
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My two beautifull granddaughters

WWW
« Reply #2 on: January 14, 2012, 04:55:26 PM »
Welcome, Brett!

 :welcomesign;

Dialysis is NOT the end of the world, but it does make for a new normal. You may find that you feel MUCH better after starting. My husband certainly did (PKD for him, too).

We've got you back, buddy!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
jbeany
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Cattitude
« Reply #3 on: January 14, 2012, 08:21:12 PM »
 :welcomesign;

Yes, somewhere, in the 6000+ members, it's usually possible to find someone who has been there, no matter what you run into.  It's great for feeling like you're not alone in the mess that is ESRD!

jbeany, Moderator
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Rerun
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Going through life tied to a chair!
« Reply #4 on: January 15, 2012, 08:12:25 AM »
Hi Brett, and welcome to IHD.  I'm so glad you found us.  Sounds like you are prepared to jump three ways..... either transplant, PD or Hemo.  You can decide when the time comes.  I hope your transplant comes soon for you.

Rerun, Moderator    :welcomesign;
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Poppylicious
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« Reply #5 on: January 15, 2012, 09:53:19 AM »
 :welcomesign; Brett!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
lmunchkin
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"There Is No Place Like Home!"
« Reply #6 on: January 15, 2012, 04:52:05 PM »
Welcome Brett,  You are not alone.  STick with us and we will help in anyway we can!

Again welcome and God Bless,
lmunchkin
 :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Ang
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« Reply #7 on: January 15, 2012, 04:59:12 PM »
 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
RichardMEL
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« Reply #8 on: January 15, 2012, 06:44:11 PM »
Welcome to IHD, Brett! You have definitely found yourself a supportive community of folks who do understand much more of the sorts of things you're dealing with as many of us have had to go through similar things.

I hope you can get that wonderful gift of a transplant before you have to deal with that darn machine. Either way we'll be here.

RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Jean
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« Reply #9 on: January 16, 2012, 12:59:38 AM »
 :welcomesign; :welcomesign; to IHD. This is the place to find out everything you will ever need to know. We are all in the same boat and are glad you found us.
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One day at a time, thats all I can do.
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #10 on: January 16, 2012, 03:12:17 AM »
Hello Bret..what country are you from?

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
PKD-Bellevue
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« Reply #11 on: January 16, 2012, 05:42:56 PM »
Quote from: rsudock on January 16, 2012, 03:12:17 AM
Hello Bret..what country are you from?

xo,
R


I live in Bellevue, WA USA




EDITED - Quote Error corrected - Bajanne, Moderator
« Last Edit: January 18, 2012, 09:11:12 PM by Bajanne » Logged
chook
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Born to be a Granma!
« Reply #12 on: January 16, 2012, 06:21:23 PM »
 :welcomesign; Keep posting - this site is such a great resource and at times, a sanity saver.
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
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