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2kidneystomany
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my Baby Isabelle
« on: July 07, 2009, 02:47:04 PM »
Hi every one, I just want to start off introducing my self  and explaining the name.Well my name is Tina and I am 34 years old, But I have had 2 kidney transplants and have had ESRD since I was 9 years old.I have a thing called membranoplerlivativglamanrnionaphrites.or something thats spelled close to that anyway what it means in shorthand no matter how many transplants I have they will always go bad within about 7 years max. witch would have been nice if the Doctors told me that way back in 1983 when I first got sick.9 Years old sent to Children's Hospital in Pittsburgh Pa, Doc said oh well her kidneys are failing and we cant do anything about it so I was only allowed to have 2000mg of sodium a day and no salt on anything,that means no Pizza ,no birthday cake ,no dark pop no nothing,well my kidneys held out until I turned 16 when My mom gave me one of hers .Well that got me Thur highschool .then when I was 21 and two months before I was to get married my kidney failed .So I went on pertianel dialysis not the best wedding present.Then a few months later my cousin gave me her kidney.and again 4 years later it failed as well .This time I was out of options had to go Hemo dialysis.and in march of 2000 started  .All the docs are hounding me to get another  but three times is not a charm for me when I already know the outcome.Present day I do Dialysis myself at home with nxstage home hemo few bumps in the road but OK for now
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willieandwinnie
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« Reply #1 on: July 07, 2009, 03:23:41 PM »
 :welcomesign; Tina. WOW! What a story. We are so glad you found us and we are sure you can share your experiences and maybe get some information from us and plenty of support. Please post often.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
willowtreewren
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My two beautifull granddaughters

WWW
« Reply #2 on: July 07, 2009, 04:25:32 PM »
Welcome, 2kidneys.

 :welcomesign;

One of the things I have learned on this site is that doctors and the medical profession as a whole tend not to tell us everything we need to know. Your story is a perfect example.

I hope you find as much community here as I have.

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. :)
Romona
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« Reply #3 on: July 07, 2009, 04:34:44 PM »
 :welcomesign;
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Razman
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« Reply #4 on: July 07, 2009, 05:41:44 PM »
  It's great that you joined and I hope that you will visit often.  You've been through a lot and you are an inspiration to others. 
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Joe Paul
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« Reply #5 on: July 07, 2009, 10:57:26 PM »
Welcome Tina, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #6 on: July 07, 2009, 11:42:47 PM »
Welcome. Wow.  What can I say.  Thank God for dialysis?  Look forward to getting to know you.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
kristina
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« Reply #7 on: July 08, 2009, 01:51:42 AM »
Dear Tina,
Your story is very touching and I am very sorry for what you went through. I wonder if you could be more clear about the kidney disease you were suffering from. Was it called chronic proliferative glomerulonephritis?
Secondly, and please correct me, if I am wrong, did you think your transplant failures were caused by this disease peculiarly manifesting in some way?
This disease is obviously in the kidneys and one would think if you take the kidneys out, the disease goes with it. Or does it?
Or, did your two kidney transplants fail because of rejection?
Sorry to ask all these questions, but I suffer from chronic proliferative glomerulonephritis with Lupus and MCTD and I am currently in ESRF and I try to understand all eventualities.
Hope this is OK with you, kind regards and all the best, Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
2kidneystomany
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my Baby Isabelle
« Reply #8 on: July 08, 2009, 08:44:18 AM »
Dear Krista what I have I had from when I was a child it is in my blood not the kidneys.so as many transplants that I may receive they will always fail my blood kills them and there is no way to cure it.Even If I need blood it takes along time to get because there are so many antibodies in my blood because of this I am healthy for the exception of the kidney thing but it can never be cured .i hoped that answered some of your questions I would be glad to answer anymore you may have.
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Darthvadar
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« Reply #9 on: July 08, 2009, 10:08:35 AM »
 :welcomesign; Tina...

Good to have you on board...#

You'll find a lot of love, and great support here... I know I have!...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
kristina
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« Reply #10 on: July 08, 2009, 11:14:28 AM »
Dear Tina, thanks for your answer.
I am very sorry for your predicament,
it sounds like a rare disease and
I do feel very much for you
and send you my kind regards,
Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
jessup
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Gemma - the tucker monster
« Reply #11 on: July 08, 2009, 10:24:41 PM »
:ausflag;
G'day and  :welcomesign;
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David13
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A meow massages the heart.
« Reply #12 on: July 10, 2009, 04:13:45 AM »
Welcome!   :welcomesign;
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
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