I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: 2kidneystomany on July 07, 2009, 02:47:04 PM
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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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: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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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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:welcomesign;
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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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Welcome Tina, good to have you aboard.
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Welcome. Wow. What can I say. Thank God for dialysis? Look forward to getting to know you.
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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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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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: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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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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:ausflag;
G'day and :welcomesign;
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Welcome! :welcomesign;