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I Hate Dialysis Message Board
Dialysis Discussion
Dialysis: Transplant Discussion
Ain't gonna hold my breath
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Topic: Ain't gonna hold my breath (Read 3062 times)
amanda100wilson
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Ain't gonna hold my breath
«
on:
July 11, 2012, 05:50:59 PM »
As many of you know I am on NxStage and have been on dilalysis this time around nine years. My previous transplant sensitised me, hence the absence of calls for a transplant. I have been on the list the majority of time since my last one failed and have not had one call. About a year my husband and I were listed as donor and recipient on John Hopkins sensitised patient program, but having told that I have one of the highest and most complex PRA's That they have come across, because of the number of types of antibodies that I have, I haven't held out much hope.
Anyway several weeks ago, I was informed that initial screening showed that there may be a suitable transplant for me. I had a phonecall today saying that the kidney is as compatible as they hope to find for me (I know that I will have to have two to three plasmapheresis sessions prior to any transplant). Apparently we would be part of a four pair chain headed by an altruistic donor. My husband is a lot more cautious than me, and obviously has a lot of questions to ask as he doesn't want to squander a kidney if there is a high chance that it won't be a success. He is very cynical about things in general, me less so, but obviously there are a lot of questions to be answered before we proceed.
Then there are the practicalities. All of our family are in the Uk ,and the date they are suggesting is August 21, just after my son starts back to school, a new one for him as he is entering middle school. My husband does not want to take him out of school, which I understand but is not happy to ask our neighbors to look after him. Our parents are getting old, and my mum is a nut job, who the moment I asked if my dad old come over as a carer for me after the operation, started talking crap as she always does, worrying about trivialities. We haven't asked his parents yet, although I am fairly sure that we can count on them.
Anyway I am cautiously hopeful that all will turn out well.
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ESRD 22 years
-PD for 18 months
-Transplant 10 years
-PD for 8 years
-NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.
Always look on the bright side of life...
boswife
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us and fam easter 2013
Re: Ain't gonna hold my breath
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Reply #1 on:
July 11, 2012, 05:57:59 PM »
oh Amanda, im wondering if your anywhere near me. I would take care of you in a heartbeat. I so hope that this is something that will happen for you as it seems a real blessing to have FINALLY come around. Wishing and praying you the best.
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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
cassandra
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When all else fails run in circles, shout loudly
Re: Ain't gonna hold my breath
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Reply #2 on:
July 12, 2012, 04:42:04 PM »
I do hope you find a solution to overcome all these extra complications Amanda. Wishing you all the best.
lots of love, and strength Cas
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I started out with nothing and I still have most of it left
1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96
still on waitinglist, still ok I think
lmunchkin
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"There Is No Place Like Home!"
Re: Ain't gonna hold my breath
«
Reply #3 on:
July 12, 2012, 06:39:25 PM »
Amanda, Im so happy that there is a possibliltiy for you. You could come stay with me if you like! I know you live in GA which is a connecting state to Tenn, but I couldnt come to you my dear. Would do it in a heartbeat, like Boswife!
If I know you, you will be fine when the time comes and where there is will, there is a way!
Keeping you in my prayers, gal!
God Bless,
lmunchkin
Logged
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
amanda100wilson
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Re: Ain't gonna hold my breath
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Reply #4 on:
July 12, 2012, 07:46:10 PM »
My main issue is that I would need to be up in BAltimore for about six weeks, my husband for less Time and I would need someone to come and look after me, which would probably be my dad who would probably need tobe there for My husband while he recovers. Then my in-laws would need to come over to look after my son while we are both at the hospital and then my husband could look after him until I came home. I have a clear plan but all of a sudden the time that I will need to be up there comes as a big surprise to my DH even though I told him all of this at the time.
Logged
ESRD 22 years
-PD for 18 months
-Transplant 10 years
-PD for 8 years
-NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.
Always look on the bright side of life...
lmunchkin
Elite Member
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Posts: 2471
"There Is No Place Like Home!"
Re: Ain't gonna hold my breath
«
Reply #5 on:
July 12, 2012, 07:51:48 PM »
Men!!!!! lol
lmunchkin
Logged
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
MooseMom
Member for Life
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Re: Ain't gonna hold my breath
«
Reply #6 on:
July 12, 2012, 08:51:01 PM »
Amanda, in my very, very, VERY humble opinion, you have to do whatever it takes to get off dialysis and grab the opportunity for a more normal life. Make the sacrifices now that will make it happen so that you will be in better health in the longterm so that you can care for your family. Your husband cannot makes excuses. He needs to do what it takes to make this happen.
I know that taking your son out of school is not ideal, but it won't kill him. I'm sure he'd rather have a healthy, happy mommy who is not having to dialyze anymore! Maybe you could approach the school, if there is time, to come up with a short term home curriculum.
I do understand him not wanting to "squander" a kidney should there not be a good chance of success. Still, now is the time to start envisioning some game plan in case this all pans out. I am so hopeful for you. Please keep us posted, OK!?
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
Gerald Lively
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Re: Ain't gonna hold my breath
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Reply #7 on:
July 13, 2012, 03:31:10 PM »
Amanda:
I wouid help you but I am presently pretending to be sick so my wife will take care of me. However, Baltimore is on the other side of the World from California, but, if I could help I think it would be good for me to get off my butt and do something. See how selfish I am? Its all about me.
Logged
Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo
Human hopes and human creeds
have their roots in human needs.
Eugene Fitch Ware
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