moving ahead, at last

[xtrememoosetrax]

Hi all,

Yesterday I got my blood drawn and Fed Ex'd to NC to get going on donating to my friend. The process has been frustratingly slow up until now, due to the fact that I was mostly through with the donor workup and then my records had to be transferred across the country (long story --- see my intro), and secondly, the transplant center we're dealing with has JUST gotten signed up with the Alliance for Paired Donation, and it took them a little while to get their ducks in a row.  So basically, we've been waiting around since mid-September with, from our point of view, nothing happening, which has been discouraging.

Anyway, we are an incompatible pair, but we have a couple of possibilities.  My friend's blood type is O, and mine is A.  However, apparently "A" people with the subtype A2 can be compatible with or at least successfully donate to people with O blood.  The majority of A people are A1s, so it's more likely that that's what I will be, but if I turn out to be A2, there's a chance I could donate directly to my friend, which would be very cool.  Then I guess the next step would be a crossmatch to see if our blood "plays nice" together.  Then, maybe, transplant!!  However, if that doesn't work out (if I'm A1 or the crossmatch is positive), we have another option, which would be getting matched up with another incompatible pair through the Alliance for Paired Donation. 

So, the blood that got drawn yesterday will be tested for the A2 subtype, and if that is good, they will do a crossmatch with Robin's blood.  If that doesn't work out, my blood will also be HLA typed so that we can get entered into the Alliance's "pool" of incompatible donors. 

I'm really excited that things seem to be moving -- finally -- and it looks like this will really happen, one way or another!  So, everybody think good thoughts about us and our blood, okay?  I would be really happy to find out that I'm an A2, but in any case, it looks like we're going to make this happen!

Keeping my fingers crossed,
xm

[okarol]

  It's a slow tedious process - but worthwhile!
I am A blood and Jenna is O and I was unfortunately the wrong blood titer to donate to her.
Your friend is fortunate to have someone like you, willing to go the distance!
Best wishes to you both!
 

[Sluff]

It will happen...You are a good person. 

[stauffenberg]

I have type O blood and my wife has type A2 blood and wanted to donate to me, so we approached the nephrologist with the idea.  He said that while A2 to O transplants were possible, they were so risky he would in principle refuse ever to perform one.  So for your case the best solution would be a so-called ring transplant, as you mention, where you would donate to one person you matched while the friend or relative of that person, in return, would donate to your intended kidney recipient.

[xtrememoosetrax]

I am A blood and Jenna is O and I was unfortunately the wrong blood titer to donate to her.

I have type O blood and my wife has type A2 blood and wanted to donate to me, so we approached the nephrologist with the idea. He said that while A2 to O transplants were possible, they were so risky he would in principle refuse ever to perform one.

Yes, I have gotten the impression from some quarters that the A2 to O transplant is new, risky, unproven, etc.  And yet, from what Okarol says, it apparently isn't THAT brand new, and some transplant centers are obviously doing it.  I don't know much about this nor have I done much research, so any other info on this would be most welcome.  I am a bit confused, as well as concerned, since I obviously want my friend to get a good kidney that will last. 

[goofynina]

  So glad the process has begun, but remember, as Okarol says, it is a slow and tedeious process but the reward is sooooo great,  sending positive thoughts and prayers your way my friend 

[thegrammalady]

good thoughts, good thoughts, good thoughts..........   

[Joe Paul]

I hope it works out 

[tamara]

more.................              good thoughts, good thoughts, good thoughts..........  

Tamara 

[Beth36]

Wow!  Good luck and here's some more good thoughts your way!!  The blood tests are not fun but soooooo worth it!  What a wonderful thing you are doing!


Beth

[paddbear0000]

Good luck! 

[2_DallasCowboys]

Wishing you the very, very best of luck!!

Anne

[Romona]

Best Wishes. 

[donnia]

Good luck.... I will say a prayer for you both!

[angela515]

Good luck! 

[xtrememoosetrax]

OMG, I just checked and found that it's only been 10 days since I got my blood drawn.  It feels like it's been weeks!!  Meanwhile, my friend has had a few bad dialysis sessions.  Sometimes, with the speed (or lack thereof) at which "the system" seems to move, you would never guess that people's lives are at stake.  Supposedly, we could have had the results as early as last Friday or this Monday, and now it's Wednesday.  Hmmmm . . .  .  Hard to know when to assume that people are doing the best job they can and when to harass them, operating on the "squeaky wheel" theory . . . . BUT . . . I guess I've just talked myself in to calling tomorrow to find out what our status is.  [keeping fingers crossed]

[sisterdonor]

 LOL, I always called (or emailed).  I don't have the patience to wait.  Whenever I was told a particular day that results 'might' be ready I would wait til about 3pm that day and then go ahead and call.  I actually just did it today.  I was told we would know a particular piece of info by either yesterday or today.  Had I waited I doubt anyone would have remembered to call me!  I've never been treated like I've been a pest or anything.  If anything I think it shows you are motivated. 

Also, I have a tidbit for you...
If you match, you can ask if you can be the one to tell your friend the good news. 

[paris]

Where is North Carolina?  Do you know what transplant center she will be going to?  There are several members here from NC.   Keeping my fingers crossed that you get good news.

[xtrememoosetrax]

LOL, I always called (or emailed).  I don't have the patience to wait.  Whenever I was told a particular day that results 'might' be ready I would wait til about 3pm that day and then go ahead and call.  I actually just did it today.  I was told we would know a particular piece of info by either yesterday or today.  Had I waited I doubt anyone would have remembered to call me!  I've never been treated like I've been a pest or anything.  If anything I think it shows you are motivated. 

Actually, my friend who is local called on Friday and Monday to inquire.  I WOULD be bugging more otherwise.  However, sometimes a long-distance call seems to have a little more impact, so that's what I'll do tomorrow if there is no word.

Also, I have a tidbit for you...
If you match, you can ask if you can be the one to tell your friend the good news. 

Cool tip!  Thanks!

[xtrememoosetrax]

Where is North Carolina?  Do you know what transplant center she will be going to?  There are several members here from NC.   Keeping my fingers crossed that you get good news.

Baptist Wake Forest in Winston-Salem.  Thanks for the good wishes.

[paris]

I didn't mean where IS NC!   I meant where IN!  Glad you figured it out!   I'm in Raleigh, so if all this ends up by happening, I want to know dates so I can drive over and meet and greet!! I would love to meet a real live HERO!!   Baptist is suppose to be an excellent hospital.  Lots of prayers going your way!

[xtrememoosetrax]

That would be so cool !!  I will definitely let you know if/when I'm out there.

[xtrememoosetrax]

Some news:  Negative crossmatch!  3 of 6 HLA match (just as good as my friend's sister!) ! 

. . . . . BUT . . . . we still don't know if I have the A2 subtype. 

I wish I understood more about this.  Like, if we have a neg crossmatch and a good HLA match, why does the A2 subtype still matter?  I'm sure it does, I just don't understand how all this stuff works.  Anyway, stay tuned; I'll keep you posted.

BTW:  We're trying not to get our hopes up too much about the A2 thing, as the majority (I think about 80-85%) of people with A blood have the A1 subtype.

[xtrememoosetrax]

We've been waiting around for DAYS for news, leaving messages for the transplant coordinator, not getting return calls, getting more and more irritated, thinking the coordinator is a loser, etc.  Finally, though, today, the transplant surgeon called my friend.  It turns out that I AM an A2 person !! This is what we wanted, so that's kind of cool -- I'm special! .  So, they are willing to actually do the transplant!  However, my friend would have to do plasmapheresis before and maybe also after the transplant.  And the BIG caveat is that not that many of these transplants have been done, so there is little long-term follow-up data available.  The ones that have been done over the last 3-4 years appear to be doing fine, but it is not yet known how well they will hold up over the long run.  So that's kind of a big question mark. 

Interestingly, apparently "our" case has become the subject of some medicopolitical infighting at the hospital:  My friend's neph is opposed to her undergoing this relatively new procedure; he thinks she's "doing fine" on dialysis (easy for him to say!).  My friend, on the other hand, is saying "oh hell no" to however many more years of dialysis; she wants a transplant!!  The surgeon thinks the neph is pretty conservative, but the fact remains that the long-term outlook is unknown.  Apparently, emails have been being exchanged among the docs about us and this is why we have been waiting in limbo for days.  It's so wonderful to be special . 

So now the question is:  Do we go ahead with this and hope for the best, or hope to get a better match through a paired exchange?  More questions to be asked, more research to be done, more thinking . . .   No easy answers.

[goofynina]

Aww, sorry you have to make this decision.  I can totally understand your friend wanting a transplant, being on dialysis is no way to live, and shame on that dr. for trying to discourage her from getting what she wants.  Its going to be a tough decision and i just wanted to wish you all the luck and to let you know i am sending positive thoughts and some prayers your way.  Remember we are here for you if and when you need us