I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: RichardMEL on December 11, 2008, 08:19:38 PM
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This post may sound like I am resentful, but I'm not but it does get me thinking abit. Even my nurses were wondering a bit.
Last new year's day a patient received THE CALL and got a transplant. How wonderful! I met him a few days later in the unit because unfortunately his transplanted kidney was not functioning. Over the next few weeks, alas, it failed and had to be removed. We all felt so much for this man - he's a similar age to me, and through chatting it turns out he'd been on the list around the same time as me, and was the same general blood group. So the fact that he got a call gave me a general sense of "well maybe I could be sooner rather than later" given the nature of how the list is worked in terms of matches and time waiting etc.
Well the other night I was told this same guy got a second transplant - so that's 11 or so months later. Now don't get me at all wrong here. I am totally stioked for him and hope like crazy for his and his family sake this one takes and he has no rejection problems etc.
However even my nurses were wondering and we discussed this... does this mean I have special/unique antigens? He is a better match for those donors? I'm not resentful that he got a second chance, but it's sort of like "Well I'm waiting too" and you wonder just what goes on out there. Now for sure it's prob that he was a 5/6 match and I might have been 2/6 so of course you'd go for him, not to mention X other people out there around a similar "spot" on the list (I know it's not linear, but you know what I mean by that). So I don't know. Do I take heart and think well maybe sometime soon? Or not.
I'm not upset so much as just thinking it's funny how it can happen like that... but of course I do sit here wondering how long till I get that fateful call?
wondering.....
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Do you know your PRA level?
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no, I don't.
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Your transplant hospital should be able to tell you if your antibody level is very high, making you difficult to match.
A panel of reactive antibody (PRA) is performed by mixing the patient's serum (white blood cells) with serum from a panel of 60 randomly selected donors. The patient's PRA sensitivity is determined by how many of these random samples his or her serum reacts with; for example, a reaction to the antibodies of six of the samples would mean a PRA of 10%. High reactivity (also called sensitization) means that the recipient would likely reject a transplant from the donor. The more reactions, the higher the PRA and the lower the chances of an overall match from the general population. Patients with a high PRA face a much longer waiting period for a suitable kidney match. (from http://www.answers.com/topic/kidney-transplantation)
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I sent off a request to the transplant co-ordinator. Will see what she says.
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Hey Rich,
My PRA is 0. My Blood Group is A. (The best I am told in terms of waiting time) And I have been waiting longer than you. I was put on the list 4 months before starting dialysis. So 4years for the list 3.5 dialysis. I don't mean to say "me first", thats not how it works. My Neph was also curious to my name not coming up and investigated. He received a letter from the Red Cross that outlined my Antigens. It was not good news. I have an extremely rare combination of Antigens. I sat there stunned, as I am just white Caucasian English/Irish history. You get three from either parent and I was definitely a "Friday arvo" genetic muckup! I have been told I will not match with anyone and will only receive a Transplant on waiting time alone. Needless to say I was and still am bummed. :stressed;
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Hey Rich,
My PRA is 0. My Blood Group is A. (The best I am told in terms of waiting time) And I have been waiting longer than you. I was put on the list 4 months before starting dialysis. So 4years for the list 3.5 dialysis. I don't mean to say "me first", thats not how it works. My Neph was also curious to my name not coming up and investigated. He received a letter from the Red Cross that outlined my Antigens. It was not good news. I have an extremely rare combination of Antigens. I sat there stunned, as I am just white Caucasian English/Irish history. You get three from either parent and I was definitely a "Friday arvo" genetic muckup! I have been told I will not match with anyone and will only receive a Transplant on waiting time alone. Needless to say I was and still am bummed. :stressed;
I'm A+ so I guess we're not in competition?! The thing is yeah that is interesting. Maybe you and I have "special" antigens (we probably match with eachother! LOL)... I guess this thread sounds a bit whiny and a "why NOT me?" sort of thing, and sure you've been waiting a year more than I have. I totally get that and trust me if it was just between you and me of course you should get it first (assuming all other matches equal). No question. I don't WANT to sound like a whinger but what happened it has got me thinking a bit and I guess I feel a bit flat even though I have absolutely no real concrete information to back that up with (as in hiss HLA's vs. mine) or even like you in terms of outlining the antigens. I may ask the co-ordinator about that also just to see if she might do similar. In a way I guess I'd like to know one way or the other? If I am that rare in terms of HLA's (as in "Special") then I guess that would give some perspective and be as bummed as you are (and damnit I'm not an ass man!! I'm a leg and boob man!!! :rofl;) That's pretty tough to be told you will not match with "anyone" I mean surely that's impossible - since if you have that particular set of antigens there MUST be others with that same set. Now OK if it's a rare set, the chances may be far less than others I can understand that. It's funny because A+ is one of the more common blood groups out there, so on the basis of percentages you'd think yep, we'd have a better shot to get a match of some sort, but I guess those pesky mum and dad bits get in the way....
Wattle I'm so sorry you're bummed... I feel your frustration and how you must feel... :grouphug;
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oh by the way my nurse also suggested we might start to seriously look into ABO incompatable transplantation from my brother (who is a zero match) because maybe this could well be an issue for me. Might have to go see someone at Royal Melbourne.....
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I hope you get some answers RM and I don't think any of us think you sound "whiny"....it's more of wanting to know "why" and we all want that.
Ann
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RichMEL everything about you is special so why should your antigens be any different - seriously though, wishing you get the call soon :grouphug;
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Being on top of your care is not whining; it's survival. I am very proud of you for checking and taking care of business. We are our own best advocate and although it's difficult, we have to captain our own ship. The doctors and nurses are our crew.
Stay strong. We are all behind you 100%.
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When it comes to transplants, antigens use to be the main focus, but over the last few years its the antibodies that are now thought to be more important for matching.
Your blood type "A" is an advantage (the + or - don't matter when it comes to organ transplants) in the case of living donation because you can have an "O" or an "A" donor. That increases the potential for more donors for you.
In the US, when it comes to deceased donors, "O" blood type donors may only give to "O" recipients. (Same with other blood types, even though O can match everyone, it is given only to O's.) I imagine it is the similar for you.
This is a good overview of "Overcoming Antibody Barriers to Kidney Transplant" http://discoverysedge.mayo.edu/abo_posxmatch/index.cfm
More info here about "Incompatible Kidney Program" http://www.hopkinsmedicine.org/transplant/Programs/InKTP/blood_type.html
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I totaly understand where your coming from Richard.
Although you handle things much better then i likely would have :-(
I hope your turn is right around the corner. Although i havnt spoken directly with you i read most of your posts and have learned much from your knowledge as well as many others here.
We are all :waiting; and wondering here with you.
I dont think your whining i think your ready to get your turn at a new lease on life without the machines controling your movements.
P&K
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As far as I am concerned whine all you want! It might do you good if the whining is put to a purpose. Ask questions. Be whiney! It that does not work go kick some :sir ken; :sir ken; :Kit n Stik; :Kit n Stik; .
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oh by the way my nurse also suggested we might start to seriously look into ABO incompatable transplantation from my brother (who is a zero match) because maybe this could well be an issue for me. Might have to go see someone at Royal Melbourne.....
Rich, I would give it a go. They are not really concerned about the zero match with a live donor. The program is going very well.
Tamara is the "Poster girl" for the RMH. Literally, her photo is on all the posters!! :cheer:
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"Tamara is the "Poster girl" for the RMH. Literally, her photo is on all the posters!! "
Well, can we see a photo of the poster please???
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Here's our Star girl Tamara! :cheer: :cheer:
"Display board at Royal Melbourne Hospital re the abo incompatible transplants and the results so far.....
The RMH-based team achieved the first ABO incompatible renal transplant in the Southern Hemisphere, and have as a team now essentially set up this programme for Australia. The programme is on-going here, with other hospitals now developing programmes, in the light of this experience." Tamara's Quote :cheer:
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Thanks so much Wattle. That's great.
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I want to whine right along side RichardMel. My husband Marvin is O+. The first time around, he had a low PRA, and he waited, and waited, and waited. The docs told us the average "wait time" back then for an O kidney was 18 months (that was back in 1995, so you know the average wait time has increased drastically since then). The whole time I was begging to be his donor (same blood type, but a 1/6 match). Five and a half years went by...the whole time, we saw quite a few other patients at his clinic get transplants, and we kept wondering why it was taking so long for Marvin's match to come up. His neph told us that because Marvin was an O blood type, the wait was longer (as he had to have an O match -- while other types, like A and AB, could receive an O, too). I said, "It looks like they would keep the O's for the O's," but the doc said it didn't work that way. Most people, the doc said, have type O, which means there are more O's waiting. Again, I said, "So why do the A's and the AB's and the others also get O's when an O is the ONLY type an O can get?" The doc said, "It doesn't work that way."
Luckily, they finally let me be Marvin's donor, even though it was a long shot that his body would accept my kidney. They were wrong-- and Marvin's body took my kidney with no problems. But, then another longshot happened -- my/Marvin's new kidney contracted the same disease in his body that destroyed his original kidneys, and it only lasted three years and three months before it gave out. Talk about bummed!
This second time, Marvin has been back on the list for five years and two months. He now has a high PRA (98%) thanks to my kidney being transplanted in him. When I asked the neph how long he thought Marvin's wait would be this time, he said, "Long -- very, very long." He wouldn't even give me an estimate in months/years. He did say that Marvin's name would "come up" more often because of his high PRA, but he added, "But he will be ruled out in 98% of the cases." So I said, "Is it a longshot?" and he said, "Yeah, it is." Bummed again!
While I whine, Marvin doesn't. He said he's waiting for his "perfect" kidney and when the time is right, it will be his. I wish I could see it this way.
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There is another thing to think about. I just learned yesterday when I had a visit to transplant clinic, the final mixing can show reaction. Even though on paper and all the testing it could be an excellant match, it might not be. I wondered about this. My donor was from another area. No one in the area where his kidneys were recovered matched. I am type "O". There had to be lots of people with type "O" blood in his area. Also a friend was called for a perfect match. Just before surgery it didn't work out. There were antibodies that weren't detected with previous testing.
I hope you get a kidney soon! You are so sweet!
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I am going to say it. I don;t want to say it. You might throw bricks at me. But here goes....
In Gods' own perfect timing things will happen.
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Okay, I'm running and ducking now! :Kit n Stik; :Kit n Stik;
ME IHD
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Sorry RM I agree waiting stinks!!! I wish I had a wand that made everyone get transplanted!! I too have a high pra, 98%. That's why when my friend said she is a match I was sure she was joking! Even the coordinator said it is a miracle! You can have one too, I am sure!!
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I am going to say it. I don;t want to say it. You might throw bricks at me. But here goes....
In Gods' own perfect timing things will happen.
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Okay, I'm running and ducking now! :Kit n Stik; :Kit n Stik;
ME IHD
I agree totally kitkatz, because that's even how mine happened. My whole family was getting tested before the ABO incompatible transplants were here in Melbourne. My brother in law was the best match, hey figure that one out, anyway things happened he had a heart attack and hey presto could no longer give. A couple of years later Allan and I were watching TV when they showed the ABO incompatible transplants and he was like c'mon get in there and find out about it. We did and about a year and a bit later his kidney was in me doin its thing. So yep in god's own perfect timing or in my case in tecnologies perfect timing and a few twists along the way it will happen !
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I am going to say it. I don;t want to say it. You might throw bricks at me. But here goes....
In Gods' own perfect timing things will happen.
I do believe you must be kin to my Marvin, kitkatz!
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Hey mate
Just read this thread
:cuddle; :cuddle;
I certainly don't have any advice or opinions but ....
I care and hope that the old saying .... the longer you wait the sweeter it is ..... comes true for you soon
I'm sure you will get the call and it will be the most perfect kidney for you
Take care and continue to be positive
:beer1;
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If you whine here, no worry, we will understand. Anyways, I don't think it's whining. It's completely legitimate to want to understand how a decision that affects you is being made.
Can't do much except send you a :cuddle;.
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I am going to say it. I don;t want to say it. You might throw bricks at me. But here goes....
In Gods' own perfect timing things will happen.
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Okay, I'm running and ducking now! :Kit n Stik; :Kit n Stik;
ME IHD
I agree and am fine about waiting. I am doing ok on PD. The problem is ...... as you all know by now........ I have NO patience. It use to consume me, waiting for the phone to ring. Now I just go about my daily grind. I haven't got a bag packed or even a list of things I might need. I figure I will just wing it. There are plenty of people who will rush out and buy me a nice pair of PJ's. I did find something Meinuk said when she got the call amusing. One of the first things she thought of was "I have things on this week". It's funny but that goes through my head now. I lay in bed thinking of when the call may come and all I can think about is all the things on the calender. I told you I was weird, genetics and all! :urcrazy;
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Thank you everyone you're all so supportive :) :grouphug;
I talked again about it at the unit yesterday with my primary nurse. So far so good for the guy who got the call which is awesome. Fingers crossed.
About waiting for the phone to ring... it's funny because sometimes it comes to mind and other times it doesn't. I mean I always keep my phone on unless I'm in a cinema, meeting or movie or some other place/situation it would be inappropriate. I don't wander around waiting for it to ring though - I know that sort of thing can drive you crazy and as time goes on just get you depressed so I try to be positive about it. Just sometimes, during those quiet times in the middle of the night or whatever when there's not much to do but be alone with your thoughts, I do wonder.
I also have to remember thet I have it good compared to a lot of folks on dialysis - I am mostly stable, my labs are pretty good and the most important thing - I am actually allowed to have a transplant. I see plenty of patients come through who are either too old, or unable to be on the list for one reason or another and my heart totally goes out to them because baring medical breakthroughs dialysis is all they will know.
I talked to my family about it. They want me to ask the co-ordinator to find out about the antigens so I might see about it.
Thank you everyone for your support - specially all those nice things you all said about me. Not sure it's true but hey I'll accept it :)
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We love you! :cuddle;
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You are one of the most genuine, caring and best guys on here :cuddle;
(it's OK Sluffbunny I said ONE of....)
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Richard, there aren't enough words to tell you how much we all love and respect you. If I could make it happen, you would get a kidney tonight. You deserve it so much. You give so much of yourself to IHD. Kindness seems to just flow out of you. You always have great wisdom and insight to others problems and I am grateful to know you. Keep asking your center questions and pushing. Go ahead and whine -- just make sure you have some cheese and crackers to go with it! :rofl; This month is my 3 year anniversary on the list. I never wait for the phone to ring and unpacked the bag after the first year. "special antigens"?? You are just special everything!! :2thumbsup;
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Paris if I'm so special how come I am yet to receive those "special" pictures of AlohaBeth HUH??? HUH???? :rofl:
Again everyone thank you for the super kind comments. I honestly don't deserve them. I'm just me. I try to help where I can and give my opinion (right or wrong).
I hope everyone who is waiting can get a magical gift soon!!!!!!
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Sorry Richard....I missed this thread. I have to be more conscientious about looking at the transplant stories. All I know is that I constantly hear of people getting transplants when they have been on the list a very short period of time and wonder about those who have been on it a very long time. There is so much involved in the matching. I also think they take a look at your whole situation and if you are coping well and your bloods are fine they would be more inclined to give an available kidney to someone else who is in more ragged shape. I am sure they look at all those factors. Age, health, how you are coping etc etc. It is hard for me because I don't want a transplant...had the offers but I have seen too many go wrong in my family so I think I would prefer to be in control of what is happening to me. My family has other weird problems as well that doesn't help with rejection. All my family had friend/family donors but I don't think they would have gotten a transplant if they had to depend on the list. Anyhow, I am not going to say never but if I am reasonably well, I can't see I am going to be in that much of a hurry. But I really hope you get one soon. You just carry on whinging (don't think that is what you are really doing by the way), everyone on this site has good reason to. xxx
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Well I know that many factors go into the transplant choice and certainly me being stable on dialysis would be a factor against getting a go against someone in greater need(ie: sicker). That's OK I'd rather be more stable than sick!!!!
My main understanding of the general policy in oz is:
* Blood Group Match
* Antigen Match
* Time on Dialysis
and I had heard they skew a little to younger people - I presume those that can then get back to work and living a longer life. That is just anecdotal I have heard from dialysis nurses so don't know if that's true or not.
Obviously for the average of 4-5 years they quote lately that means some will go at 8 months or 2 years, and others at 7 or 8. I heard of one a few months back who had been waiting 11 and finally got one.
I don't know how I feel about potentially waiting another 8 years though. I suppose if I am I would be whinging even more... but I sure as hell hope Wattle has one by then!!!!
Still no response from transplant co-ordinator.
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Well folks I have some answers :)
First of all I have a PRA of 0% which is what I expected but good to know.
Secondly I asked about the HLA antigens etc, this is what I got back:
In regards to rare HLA types often this relates to specific ethnic
groups that are difficult to match,
I have spoken to VTIS and your tissue typing doesn't come up as being
rare or difficult, in fact you have
Come up previously matched for potential donors in the past
unfortunately someelse has either one better
Match or been on dialysis longer, so potentially you should get matched
again in the future.
This gives me some confidence at least that well I have already matched so potentially could again - maybe soon - and obviously the longer I wait the chances that I will be closer to "time waiting" top of the list would be more.
So well fingers crossed I guess??? However I want Wattle to get one first. We may well be in competition given we're both A's so who knows. I certainly would be most happy for Wattle to get that call ahead of me!!! Even better, if we both get the call!!! :) Sad to say but potentially one poor donor could help both of us...
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Richard, it seems like the news is good. My kidney prayers will focus on a healthy kidney for both you and Wattle. I thought it would happen in '08, but '09 for sure!! :cuddle;
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hell yeah Paris! I gotta get over there and snag me some AlohaBeth before that guy in France whisks her away!!! hehehe
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What is the average wait time for A kidneys, do you know? We can check here at the stats on the OPTN website, by state and blood type, do you have the same ability there?
It all sounds good Richard! Very good! :cheer:
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That sounds quite hopeful Richard and my hope is that you get the call very very soon. Of course I want you to get the girl too, whether it be AlohaBeth or some other equally fantastic young lovely. You deserve both.
:cuddle;
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What is the average wait time for A kidneys, do you know? We can check here at the stats on the OPTN website, by state and blood type, do you have the same ability there?
It all sounds good Richard! Very good! :cheer:
I do not believe we can do that here.
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and I had heard they skew a little to younger people - I presume those that can then get back to work and living a longer life. That is just anecdotal I have heard from dialysis nurses so don't know if that's true or not.
I think that here in the US, children go to the top of the list.
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Hey Richard , When i get home i will find the lastest newsletter i have from the RPA transplant team it had some good info about the list and waiting time . Have you been on this site www.anzdata.org.au it has stats on how many are on the list etc
cheers charee
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Thanks Charee... interesting reading.. sad the numbers are so low. So right now I am 1/1300odd waiting... with approx 300-350 transplants a year you can see why the average wait is 4-5 years....
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Well folks I have some answers :)
First of all I have a PRA of 0% which is what I expected but good to know.
Secondly I asked about the HLA antigens etc, this is what I got back:
In regards to rare HLA types often this relates to specific ethnic
groups that are difficult to match,
I have spoken to VTIS and your tissue typing doesn't come up as being
rare or difficult, in fact you have
Come up previously matched for potential donors in the past
unfortunately someelse has either one better
Match or been on dialysis longer, so potentially you should get matched
again in the future.
This gives me some confidence at least that well I have already matched so potentially could again - maybe soon - and obviously the longer I wait the chances that I will be closer to "time waiting" top of the list would be more.
So well fingers crossed I guess??? However I want Wattle to get one first. We may well be in competition given we're both A's so who knows. I certainly would be most happy for Wattle to get that call ahead of me!!! Even better, if we both get the call!!! :) Sad to say but potentially one poor donor could help both of us...
Hi Rich, I just came across this post again. It's funny how things happen. I had never been flagged for a potential transplant the whole time on the list. I had adjusted my head around waiting 5+ years. You never know what is around the corner. You know the rest of my story! I didn't have a bag.. wasn't allowed to go home... had a diary full of dates (kids went back to school the same day).... and I hadn't shaved my legs!!! :o
I use to lie in bed thinking of how it would happen and go through the list of the things I had to do and take. It all turned out sooo differently.
I really hope you are surprised soon and your world is turned upside down like me! :cuddle;
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thank you dear Sally. You're awesome ( :rofl; at unshaved legs... but you had the gorgeous stockings!! hehehe)...
I am just so glad that you DID get that transplant ahead of me. The system works the way it is supposed to!!!
I had my primary nurse whinging at me yesterday about how the Royal Melb has so many transplants, but we don't, and how come my number hasn't come up and all this stuff. I felt like *I* had to educate *her* about the process and that RMH does more transplants because they have a much bigger list of patients attached to them compared to us and blah blah blah... I know she is just frustrated on my behalf and it's funny I just have to tell her "look, it will happen when it happens" and *I* have to try to not get dragged into this whole frustrating issue of when, how, where etc because I think that could get very dangerous. I have a friend who swears she has a vibe it will be April/May next year. LOL. We'll see.
I just hope more than worrying about WHEN it happens is that when it does that it WORKS and is the right kidney for me! That's way more important to me than getting one tomorrow. I'd rather wait extra than get one that wasn't right or might fail soon after I get it - that is, after all, the risk we all take.
It's funny really obviously as much as I try to put it out of my mind of course I tend to daydream about it, or lie awake at night and wonder what it will be like when the call comes. What they will say? How will I react? How long will I have to get there? Will it be at 2 in the morning? or when I'm in the unit??? All that kind of thing. And of course I dream about the times after... when I am recovered, and it is settled in, and I can sit at work and drink cups of tea all day and have energy and plan real holidays and all that stuff... that's the goal!!!!
Thanks again Sally - you're a real inspiration to me and I love your story and just hope to hear it get better and better.... oh and yeah, shave your legs! :rofl;
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... oh and yeah, shave your legs! :rofl;
Are you crazy... I shaved my legs BEFORE I went to theatre! Can you imagine the hairs poking through those stockings? :rofl; :rofl; :rofl;
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so you're saying I should pack a razor .. or a waxing kit in my bag??? :rofl;
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I for one will want to hear every detail about your experience when the call finally comes. And it will come. It has to because you have been patiently waiting and you must be moving up the list. And yes, you want a great match and that is worth waiting for. :cuddle;
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Thank you :)
Sometimes I've dreamed about getting the call and thinking "oh but I have to post to IHD so everyone knows!!!!" lol Of course I can always text Tamara so I know she will let everyone know if I can't :) so yeah everyone will know if/when it happens and I'll be sure to type all about my experiences when I'm able. Given the recovery time I'll have quite some time at home to do nothing BUT type on the computer!!! :rofl;
We'll see what happens.
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Rich,
I'm sure myself and Sally will be happy to fill in all at IHD also we will be there with Bells on for your pic of your bag !!!
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Gee Tamara honey you better clear that with Allan. I'm not sure how he'd feel about you wanting to see another man's bag like that!!!!! :rofl; :rofl; :rofl; :rofl;
:grouphug;
you can so bet I will be DEMANDING a bag pic(or three!) to make sure I have one to match the poster girls(pity I'm not as cute as you guys!!). I also find it hilarious that non renal people just don't "get" the whole pee thing and wonder how I can talk so openly about that stuff... oh their ignorance!!!!
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Richard, you know I continue to hope that you will be the next member that gets the call. It is coming, we just want it now! :cuddle;
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aww ty Paris that's sweet. Seriously though there are others on here, and in my unit/country that need/deserve a kidney ahead of me. I know it's a lottery. So it will happen when it happens. lol. Strangely enough as I type a helecopter has just flown in to the hospital over the road. Could be a car crash. Could be a donor organ... who knows?!!
thanks everyone for your support. I don't expect anything anytime soon but then again they often say it happens when you least expect it. Hmmm I don't expect anything from AlohaBeth either?!!!!!!! :rofl;