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molldw
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« on: February 15, 2011, 11:50:46 PM »
I first had kidney failure when I was nine months old.  Welms tumor and later diagnosed drash syndrom.  Fun Stuff.  My original kidneys were removed when I was 3, I was the first infant on PD (at least at OHSU).  First transplant at 5, second at 15 started HD  at 19.  3rd Transplant at 20 back on dialysis, forth transplant at 25.  Back on dialysis at 29.  Did nocturnal for a while, started doing nxstage about 6 months ago and am healthier than I have been in a really long time.
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paul.karen
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« Reply #1 on: February 16, 2011, 04:28:00 AM »
Welcome to IHD molldw,

Wow you have been through alot from the start of your life.  Glad you found us here at IHD.  Quess you can help us as much as we can help you.  I am glad that you are doing NXStage and that it is going well for you.  Hope to see you around the boards.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
willowtreewren
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My two beautifull granddaughters

WWW
« Reply #2 on: February 16, 2011, 08:13:39 AM »
Welcome!

My husband was on NxStage until his recent transplant. It kept him really, really healthy.

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. :)
peleroja
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I have 16 hats, all the same style!
« Reply #3 on: February 16, 2011, 08:19:53 AM »
All I can say is Wow, you sure have been through the mill a time or three!  Welcome to the group.  Glad you found us!
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Rerun
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Going through life tied to a chair!
« Reply #4 on: February 16, 2011, 01:04:22 PM »
Hello molldw, and welcome to IHD.  I'm so glad you joined us.  You have lived with this your whole life and we welcome any advice from you.  I'm glad you found NxStage.  Who is your partner (person that helps you).  I lack one so I'm not doing it.  I do in center Nocturnal.  It works pretty good for me and my days are free. 

Rerun, Moderator         :welcomesign;
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RichardMEL
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« Reply #5 on: February 16, 2011, 04:02:22 PM »
Welcome molldw!

As the others have said "wow" - 4 transplants under the age of 30 - that has to be some kind of (unenviable) record! You've certainly had a VERY tough run of it, having to live with this your entire life. I admire your strength and resolve! The best news is that NXstage seems to really be working out for you!! Is there any talk of a 5th transplant chance? Would you even consider going there if there was?

Anyway I *know* you have so much to offer us with your long and varied experiences with both dialysis, transplant, kidney failure in general and indeed as a young person living and coping with all this. I look forward to seeing your contributions to our community, and hopefully we can return the favour to you!
 :welcomesign;
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!
galvo
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« Reply #6 on: February 16, 2011, 05:55:24 PM »
G'day molldw and  :welcomesign;. Let me add another 'Wow' to your story. You're a tough 'un. Stick around.
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Galvo
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« Reply #7 on: February 16, 2011, 06:05:10 PM »
IT'S OFFICIAL!!!

You are now the Official "WOW" girl of IHD!!!

Congratulations!!

 :yahoo; :2thumbsup; :clap; :bow;
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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!
looneytunes
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Wishin' I was Fishin'
« Reply #8 on: February 16, 2011, 08:09:07 PM »
I agree...WOW!  But welcome to IHD, Molldw!   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
paris
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« Reply #9 on: February 17, 2011, 02:46:03 PM »
An amazing story!  I'm not sure what to say - you are incredibly strong to have gone through so much.  You have my admiration!  We probably can learn a lot from you.  We are glad you joined this site.  There are so many supportive people here that really care about each other. Post often, we look forward to getting to know you.  Welcome to IHD and I will add my  WOW !!!!




paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
boswife
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us and fam easter 2013
« Reply #10 on: February 17, 2011, 03:39:13 PM »
and yet another WOW! ( and to think while reading your storry, i may be the first to say it...  HA!)  Increadable life story and im glad your here to share.  ANd glad that NxS is working so well for you.  Hubby (and i his helper) have been on NxS for a bit over a month and real happy with it as well.  Share away, you have us all waiting for more :-)
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Desert Dancer
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« Reply #11 on: February 18, 2011, 05:51:22 AM »
Hello and  :welcomesign;! I guess all I can really do is add my 'WOW!' here from Phoenix! You sure have been through a lifetime's worth already.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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