I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: xtrememoosetrax on December 04, 2007, 07:21:33 AM
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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
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:thumbup; 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!
:cuddle;
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It will happen...You are a good person. :grouphug;
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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.
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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.
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:yahoo; 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 :waving;
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good thoughts, good thoughts, good thoughts.......... :yahoo; :yahoo;
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I hope it works out :thumbup;
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more................. good thoughts, good thoughts, good thoughts.......... :yahoo; :yahoo;
Tamara :grouphug;
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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
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Good luck! :cuddle; :cuddle;
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Wishing you the very, very best of luck!!
Anne
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Best Wishes. :2thumbsup;
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Good luck.... I will say a prayer for you both! :cuddle;
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Good luck! :grouphug;
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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]
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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.
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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.
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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!
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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.
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I didn't mean where IS NC! :rofl; 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!
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That would be so cool !! I will definitely let you know if/when I'm out there.
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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.
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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.
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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 :grouphug;
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xtrememoosetrax,
That's so cool that you finally know you're the right subtype! We were told to not plan on getting a non-matching blood-type transplant because they felt it was still too experimental for someone as young as Jenna - but the doctor said, "If she was 45 years old and didn't have any other donors as options, I would probably say go for it."
I think I would keep looking into the paired exchange keeping in mind that you may still turn out to be your friends best option.
I so admire your willingness to see this through!
:cuddle;
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Quick update: We're waiting a bit to see if the Alliance for Paired Donation comes up with any matches for us, and then are planning to re-evaluate the options at the beginning of March. Which may be just as well, in a way, because meanwhile, my friend's insurance coverage has changed, and the new carrier does not cover her transplant center. She's hoping that the carrier will make an exception to allow her to proceed with her current center, since she's already so far down the road with them, but of course it will probably take some time to get that all sorted out. Sigh . . . . I honestly don't know how you dialysis folks do it -- being sick, getting dialysis, and then dealing with insurance issues (difficult in GOOD health) on top of it all: It sounds to me like slogging through wet cement. I know that you do it because you HAVE to, but it seems so difficult and discouraging sometimes. Truthfully, I can't honestly say that I feel entirely sure that I would have the same fortitude in your situation.
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Good luck with the paired donation & the insurance issues :thumbup;
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I hope things work out - it is a tough road but hopefully there's a rainbow at the end! :cuddle;
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Got some good news this week: My friend's new insurance carrier WILL cover her at her current transplant center! What a relief!
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I am sure that is a BIG relief :) And definetly another step forward :2thumbsup; :yahoo;
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Definately a huge relief about the insurance!
As for the Paired Exchange vs. going ahead, I would say taking the wait and see is probably best. I know, the last thing any of us want is more time on dialysis than neccesary, but, if you can find a better match through Paired Exchange, then the kidney will in all likelihood last longer, and your friend (depending on her age) will be less likely to need dialysis in the future. Even the best matches don't last forever, unfortunately. Just my :twocents;
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Finally, some news! The Alliance for Paired Donation has found a match for us! :yahoo;
Actually, it's going to be a 3-way exchange, meaning that there are six people involved. I will travel to Denver to donate, the friend/relative of that recipient will go to Alabama to donate, and the friend/relative of THAT recipient will go to NC to donate to my friend. Amazing, isn't it?
It sounds like this could be happening as soon as April! Ok, now I'm starting to get a little nervous . . . . :) But more than that, I'm happy that things are moving forward and am feeling confident that everything is going to go well for all concerned.
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Xtrememoosetrax, This is all so amazing! I am excited for everyone involved. You are a real life hero. :bow; Thank you for making such a major difference in someone's life :2thumbsup;
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xtrememoosetrax, you make us all proud of you :cuddle;. Please keep us posted. This is amazing news. :yahoo;
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:yahoo; That's incredible news. It's amazing to see how far some will go to help others. You're an awesome person. :grouphug;
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AWSOME!!!!!!!! :2thumbsup;
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You are an Xtreme angel!!
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xtreme, this is AMAZING news! Thank you for doing so much to help your friend! :clap;
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The first projection was that surgery would take place in April; then last week I was told it looked like it would be the 2nd or 3rd week of May. The latest projection is late May or early June. Sigh. The waiting is getting old for me, and for my friend it's so much worse! However, when you consider that this whole thing involves six patients and umpteen medical, clerical, and other bureaucratic personnel, I'm beginning to think that it will be a miracle if it happens at all! Oops! -- not "if" -- WHEN. It's just that there are so many variables involved and thus so much uncertainty. And as we all know (renal patients in particular), limbo is not a particularly fun place to be. However, I'm trying to make the best of it by working on the things I CAN control -- exercising, preparing for surgery, etc. -- and letting go of those I can't. I'll keep you posted.
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Xtreme----you know how I feel :cuddle;
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You are such a special person to be doing this and, as a person awaiting a transplant, your willingness to do this for your friend makes me feel like you're giving me a kidney. Weird eh? Oh I mean hunh for my american friends. I'm sitting here wiping away tears of joy at how good some people are despite all the nasty stories we hear everyday. And of course I'm feeling a huge renewed surge of appreciation for my potential donors. We're just at the beginning of the process. I'm keeping fingers, toes and eyes crossed for all six of you.
Gail
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:bow; :bow; :bow; the moosetrax lady.
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I am in awe of living donors. There's a special place in heaven for you. :cuddle;
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Had donor workup in Denver on 4/28 and received word later in the week that I was approved to be a donor. Then, about a week later, got a call saying that "probable uterine fibroids" were seen on the MRI/MRA that was done to look at my renal vasculature, so they want me to have someone take a look and say they are just fibroids -- benign growths -- nothing cancerous. Trx coordinator tells me to see my OB/GYN; unfortunately, I don't have one. I email my PCP who does my annual Pap smears, asking if he can evaluate these. He wants to refer me to an OB/GYN.
Call the ob/gyn office; first available appt (since I am not an established patient) is June 24! This is not good, given that the target date for transplant is still early to mid June (which may not happen, but I have to act "AS IF" it will); we've got a time problem here. (It’s fascinating to “cold call” a doctor’s office asking for special consideration because you’re trying to donate a kidney and find out how little traction that gets: “yes <yawn>, well that’s our first available appointment.” Hard to blame the appt scheduler – she has to follow the rules, after all, and no doubt EVERYONE she talks to has an urgent need to be seen.)
Grasping at straws, I email the local trx coordinator, asking her if she can just order an ultrasound or something -- if it's all clear, no problem, right? She says NO, she can't do that, I really HAVE to see an OB/GYN, suggests I call university women's health clinic. I do; their first available appt is 6/11 -- better, but not good enough. Wrack brains -- what to do? I work at university cancer clinic, so decide to ask my dept manager, who handles scheduling, among other things, if she has any connections or contacts or can help in any way. She takes on this challenge with great gusto, spends quite a bit of time (time she really doesn't have) working on it, and ends up getting me scheduled for ultrasound AND ob/gyn visit next week! Great gratitude.
In the meantime, before going to Denver, found a breast lump. I've had several benign breast cysts before, so am not too concerned, but of course better get it checked, just in case. No point in going to PCP – I know that he will want me to see breast surgeon. I call for an appt with the (very good and very busy) breast surgeon I've seen before (at the facility where I work); her first available appt is June 16! (God knows how long it would be if I weren't already established.) Email breast surgeon, explaining the situation and asking if there is any possible way I can be seen sooner. She writes back, very graciously saying, “of course!” Hands me off to a nurse for scheduling of imaging, etc. About a half dozen emails and phone calls later, I am scheduled for mammogram, ultrasound, and office visit next week! Since she has no openings in her regular schedule, breast surgeon is going to see me on a day when she doesn’t usually see patients in clinic. More gratitude.
Next week’s agenda: transvaginal ultrasound on Mon. (oh boy, I can hardly wait!), mammogram and breast ultrasound on Wed., see OB/GYN doc AND breast surgeon on Thursday! Wow, the fun never ends, does it? On the other hand, next week is looking like a breeze compared to the stress of this past week! Don’t know what I would have done without these personal/professional connections -- well, I guess I would have had to go back to Colorado for all this stuff -- so am feeling very fortunate.
Am having a few lurking doubts, but overall am feeling pretty confident that all of this will turn out to be nothing; fortunately, I’ll have the answers soon. Mostly am feeling quite moved by the kindness and generosity of people who are willing to go out of their way to help with this situation -- very heartening. Will have many people to thank at the end of all this.
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How tiring it all sounds but I'm glad you have those connections and you darn well SHOULD be given special consideration given the timing issue and all. Well I for one (and we both know that everyone here also) have everything crossed that things will continue to progress and that you cross all hurdles till the big day. Special hugs Extreme. :guitar:
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It really takes a serious commitment and lots of patience to become a living donor. I don't think most people realize what you have to go through to make it happen. I admire you for hanging in there and enduring all these tests and added stress to help another person Xtreme. I think many people would have given up. I hope everything turns out fine and you can proceed with scheduling the surgery!
:2thumbsup;
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Little did I know when I started this thread (or is it a topic? -- whatever) how apt the subject line would prove to be. I haven't posted here for a while, operating on the principle that "if you can't say something nice, don't say anything at all." Not that I want to whitewash anything; the last couple months have been filled with increasing frustration and anger in the face of a seemingly mythical surgery date that was perpetually receding into the future. I do feel that there are definitely some problems with the system, but now I'm glad that I didn't vent too much of my frustration publicly, as I wouldn't want to have trashed (as I was sorely tempted to do at times) anyone involved in this process, all of whom I am SURE are doing their utmost to make it happen. The health care system, as we all know, is very cumbersome.
Anyway, here's the news: The third donor was finally approved, and surgery is scheduled for July 30!! On Wednesday last week, my friend and I were told that this was the "tentative" surgery date and wondered what that meant, having become a bit jaded on the subject. On Thurs, though, the director of the Alliance for Paired Donation told us that the ORs and surgeons are booked at all three hospitals! So -- barring unforeseen events, of course -- we have a definite date! (Oh yeah, btw, the extra tests I had to have done in May all came back negative.)
Will probably drive to out-of-state transplant center on July 27, in order to be there for preop stuff on July 29, then surgery on the 30th. Should be in hospital for 2 or 3 or maybe 4 days, then will stay in one of those extended-stay hotel places for another few days until one week post surgery, when I'm supposed to go back in for postop wound check. Then they say I will be free to go home. At least that's the plan . . . .
I'm in the process of setting up a CaringBridge site/blog so that we can keep everybody up to date. I will, of course, give you the address and will definitely keep you all posted!
Yesterday, went shopping for postop pajamas and "lounging wear." It's really time to get organized now!
Please, everybody, keep your fingers crossed for us!
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Wow! I am so glad to hear there's been progress! I really admire you for hanging tough despite the obstacles. I will keep good thoughts and pray all goes smoothly. I am so excited for you! Living donors ROCK!
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You know how much I admire you :2thumbsup; You have held strong through the process and now you are going to change someone's life. Not many people make a true difference in another's life. I am honored to know you :cuddle;
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That sounds very exciting to be finally going ahead. You're really special to have gone through all this and I wish you all the best along with everyone else involved in the exchange. I'll be following with EXTREME interest and all my strongest best vibes. You're the best. :cuddle;
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extrememoosetrax - Your words are reminding me of the enormous depth of feeling I have for Stephen's donor Michael. It's a special kind of love that I never felt before.
The act of donation is the ultimate validation of the human spirit. I truly admire you for what you are doing.
I am not enough of a wordsmith or poet to express this in the way it should be expressed, so here is a quote from Helen Keller that more or less captures what I am trying to say:
The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.
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I am full of admiration for what you are doing, you are a very special person. Sending love and prayers, may everything go well for all concerned. :grouphug;