I must have special antigens... not sure what to think

[RichardMEL]

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.....

[okarol]

Do you know your PRA level?

[RichardMEL]

no, I don't.

[okarol]

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)

[RichardMEL]

I sent off a request to the transplant co-ordinator. Will see what she says.

[Wattle]

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.     

[RichardMEL]

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.     

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!!!  ) 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... 

[RichardMEL]

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.....

[G-Ma]

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

[rose1999]

RichMEL everything about you is special so why should your antigens be any different - seriously though, wishing you  get the call soon 

[vandie]

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%.

[okarol]

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

[paul.karen]

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   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

[kitkatz]

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  .

[Wattle]

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!!   

[monrein]

"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???

[Wattle]

Here's our Star girl Tamara!   

"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   

[monrein]

Thanks so much Wattle.  That's great.

[petey]

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.

[Romona]

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!

[kitkatz]

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.
'


Okay, I'm running and ducking now! 
                                                     ME    IHD

[kidney4traci]

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!!

[tamara]

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.
'


Okay, I'm running and ducking now! 
                                                     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 !

[petey]

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!

[jessup]

Hey mate
Just read this thread
 
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