Ain't gonna hold my breath

[amanda100wilson]

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.

[boswife]

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. 

[cassandra]

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

[lmunchkin]

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

[amanda100wilson]

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.

 

[lmunchkin]

Men!!!!!  lol

lmunchkin

[MooseMom]

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!?

[Gerald Lively]

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.