I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: murphy on September 14, 2010, 09:38:54 AM
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It's been about a year that I have been snooping through your lives, so firstly I apologize for that. This site has saved me a lot of mental torture knowing I'm not alone. About me... my nurses have renamed me murphy because of the saying anything that could go wrong... I was diagnosed with FSGS in 2002. I am from Iowa, 50 year old female, married, two daughters 17 and 21. I have a great neph. and my kidneys held on until August 2009. Spent two months in the torture chamber (know as in center hemo). My husband donated to me on October 6th 2009. 1/6 match. So this is where the story should end happily. WRONG! I'm one of the small percent that the FSGS returned almost immediately. Fast and furious. After about fifty plasmapheresis treatments and many infusions of rutuximub they finallly stabilized me. Took about seven months. They now call me Stable Mabel. Yeah! My point is even after going through all this it was well worth it. I have never posted on a forum so I'm probably making a lot of mistakes. To all the new transplants, congrats and hang in there. The road could be long but not impossible.
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glad you finally decided to share yourself with us. we're glad to have you. :welcomesign;
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:welcomesign;
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:welcomesign; murphy/Stable Mabel! Nice of you to stop lurking!
;D
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OK, I admit to being selfish here. I am thrilled to hear your story because I have fsgs, too. I may be lucky and get a transplant that works for years, but then again, I may be a murphy. Who knows? But I'm so glad to hear that murphies can become mabels, so thanks so much for telling us your story. Please post often because lots of people here will be so happy to hear about your experience.
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Thanks for your welcomes. MM that is one the the reasons why I didn't join before. When my outlook was bleak I didn't want to scare all the others with FSGS. FSGS is in the new kidney but my chances are better now. My neph said if you fail I fail and thats not an option. thanks again
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Welcome aboard!! Good to see things are going better for you, sounds like you've had a long road.
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Welcome Murphy! I'm with MM - as a FSGSer myself (though with a slow moving/chronic form of it) it is definitely good to know that at the end of all that effort you seem to have a good outcome - long may it last - and long may YOU last on IHD!
:welcomesign;
RichardMEL, Moderator
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Welcome to our community, Mabel Murphy!! First of all, I love when lurkers join. That means you have had a good look at us and still are convinced that this is the place you should be. I don't have to convince you that IHD is the best! You are now an official de-lurker and a member of the IHD family :grouphug; !!! I just love your attitude. My caring prayers are with you.
Bajanne, Moderator
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Welcome to the group. You're right, there is a ton of good information here and lots of friends. Glad you finally de-lurked!
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Thanks for your welcomes. MM that is one the the reasons why I didn't join before. When my outlook was bleak I didn't want to scare all the others with FSGS. FSGS is in the new kidney but my chances are better now. My neph said if you fail I fail and thats not an option. thanks again
You don't EVER have to worry about protecting us. But thanks for the sentiment.
I like your neph's attitude!
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G'day murphy and :welcomesign;.
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yeah that's nice of you to not want to scare us, but I've learned everyone's experiences are different.. and in relation to the transplant getting FSGS straight away.. I actually asked my own neph about my own chances of this happening with a transplant. He suggested that I have the chronic (slow) form of the disease, so that even if it DOES attack a transplanted organ, the odds are that it would also go very slowly (and in that case chances are the kidney would fail for other reasons before that happened). Of course I might get unlucky and it might happen and go acute... that's just one of the risks I'm prepared to take.
Anyway thanks for being considerate of us - but this fact is this community is for everyone - and that absolutely includes you Murphy!
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I got a feeling there was some one out there "lurking". Welcome to the site.
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It's real good to have you join our community!
:beer1;