Question regarding transplant donors

[nycpetit]

How many antigens were you matched on with your donor before your transplant? I have one potential donor...age 42, I am almost 35, and another that is 30. Both are fine up to this point in testing....the 42 year old matches me so far on 0, 1, and 2 antigens (this seems to be how they label them) and the other, the younger is matching on 0 antigen. I was told statistically there is a 26 year life for the 0, 1, 2, antigen match and a 15 year for the 0 antigen match.

Am I making any sense? Is there a huge difference in that 12 year gap between those two potential donors?

I could write more...but most would be venting at this point. I hate, hate, hate my transplant center...love, love, love the nephrologist....so it's a tough call for me right now sometimes to write about my experience much..but wanted to ask about the antigen thing...

thanks
Natalie

[Cheryl in CT]

Hi, Natalie -

I'm not so sure that the difference is AGE, but rather the number of antigen matches. As best I recall, there are 6 main ones they consider, and the higher the number of matches, the better the "odds", so to speak... I've never heard "years of transplant viability" quoted in terms of numbers of antigen matches, but I guess by now they've already come up with statistics for just about everything they know of in terms of transplants. Just remember that statistics are just that - statistics.... numbers... chances... I'll bet that even right here on this board you could find any number of people who are already defying some statistic or another....

Mark and I were not a "perfect match" (as my hospital referred to a 6 out of 6) but we were close, and as far as I know, that's what mattered in the determination that we were "compatible". (Remember I told you how they called from the hospital and announced "You two are compatible!" and all I could say was "After 25 years together, we'd da..ed well better be!") Well, the way I saw it then (and still see it now) is that a "perfect" 6 out of 6 would be great, but I'd go for the best match I could among my options. If further testing rules out any potential donor, so be it, but if ANY donor is considered "compatible enough" to do the trick, I'd go for it.

I've been thinking of you lots, & I promise I'll be in touch soon - as soon as all this end-of-the-school-year madness settles down, both at work & at home.

Take care of yourself, Natalie, and don't let those people at the center get to you - in the long run, it just isn't worth the aggravation, especially when you have a neph you like & trust.

love,
Cheryl

[Iain]

Not sure how helpful this is for you, but my cadeveric transplant was a 4 out of 6 match. I was hoping for a 6 out of 6 which would have been better, but the doc said that with the drugs they've got now a 4 was fairly common now. He also said that because the donor was very young it was a good kidney, so I thought what the hell and just went for it. Best of luck.

[nycpetit]

Well, neither of my two possibilites at this point are matched on more than two..it sounds to me like I might be going in for a bad thing...but I don't have any other possibilites right now.....

this is so confusing sometimes....

thanks guys

[Elaine]

Natalie have read u posts - such a dilemma lotta questions worries concerns etc Im sure.

Wotever happens... I wish u the very best of luck!

My daughter for some obscure reason only has 4 out of 6 digits or antigens or wotever they call them!! when they checked her tissue typing etc so we have been told shes probably would need to have ideally a 3-4 match if at all possible we are hoping to get her bak on transplant waiting list after her kidneys have been removed as they are giving her soooo much grief/ proteinurea ++++ leakage.

Just gotta try take each day at a time if at all possible

best wishes Elaine UK

[Anne in Va]

Hi Natalie,

Yes it can be confusing! As I understand it, STATISTICALLY SPEAKING, a zero antigen match from a living donor is better than the usual three match from a cadaver. The only thing better, than a zero, is a six cadaver match. So if you have a living donor match with any kind of antigen match it's gravy. I did have a chart which showed the graft survival rates for all types of matches but I cannot seem to find it just now.

There may be some other tissue consideration which will make one donor better than the other but your doctor will have to determine that. It sounds like either donor would be good. Sometimes when there are two good possible donors, the center does not like to get in the middle and will leave the final decision to the people involved.

Elaine, if you are reading this, I have five antigens. The reason for this is my parents had at least one antigen in common and passed it on to me. This may be what happened in your daughter's case. Actually I do have six antigens but one is a double. I was told that in order to have a perfect match I would only have to match five instead of six antigens. So your daughter should only have to match four instead of six antigens.

Interestingly, my donor's parents had an antigen in common and passed it on to their daughter. It happened to be the same double antigen as mine! Seemingly we also had some other tissue issues in common. Really strange considering she is of mixed heritage - Japanese,
Chinese and Hawaiian and I am a plain old white Brit! Especially when you consider that different races can have race specific antigens. Just goes to show that this whole concept of matching can be really strange at times.

This University of Michigan site has a good, and simple, explanation of matching.

www.med.umich.edu/trans/public/hla/hla_&_you.html

Hope it is of some help.

Best Wishes, Anne

[R30]

My Consultant informed me that a 6 out of 6 match was only possible if you were identical twins (I am a twin, but not identical unfortunately). However, he has also told me that a transplant can be done with a O out of 6 match - because it's a live transplant, the chances of it surviving into it's tenth year etc. are very high.
Personally, my twin is a 5 out of 6 match, but we are going with my mum (who is a 4 out of 6) as she's 70 and won't be able to donate very shortly due to her age.
Don't give up hope because you feel that your chances are slim. Like I said, my transplant unit has patients with a live donor on a 0 out of 6 match that are doing fine.

[Anne in Va]

Hi,

I think you misunderstood your doctor a little. The only COMPLETELY perfect match is from an identical twin because they are perfectly identical in every way. A six out of six ANTIGEN match is usually called a PERFECT match because the antigens match perfectly, which MAY allow for a longer lasting/more successful transplant. However, unless, the kidney tissue involved is from identical twins, then the kidneys are not perfectly identical. It is possible to have a 6 out of 6 match from either an unrelated cadaver or living donor.

In the U.S., when a cadaver kidney becomes available for donation, the list is first checked to see if anyone is a six antigen match for that kidney. If there is a match then that person is offered that kidney. A person at my hospital was just recovering from fistula surgery. He had never been on dialysis. A six match became available and he received the kidney.

Like you said many people have received a successful 0 out of 6 antigen match from an unrelated living donor and have very successful transplants.

[Pam]

Hi Natalie!
I don't know if I would count TOO much on stats-like Cheryl said, everyone is different and many on this board are defying the statistics! I cannot remember the specific antigen match of my transplant but it was a cadaver transplant and I have never had a hint of rejection. It has lasted 27 years. On the other hand, my first one was from my sister and rejected within one year.
My sis and I have speculated that perhaps it did not work because I was only the second or third tx they had done at our center and they just didn't know that much yet in the early 70's. Who knows? Statistics are just that-they do not tell the whole story-because of the differences in people they are just numbers that are collected to form a general opinion.
I know you are confused right now about your options, but it helps that you have a neph that you like and trust. I have lost the confidence that I had in my tx surgeon because of some recent things that have happened with me, but I do have a neph that is very good. The surgeon I have to go to did not do my tx (those docs retired a long time ago)-and sometimes I feel as if I am just taking up space in his waiting room. I was not told to get a regular kidney doc (not surgeon) until a short time ago. I am glad I did even though I still have to see the tx surgeon twice a year. At least one of my kidney docs cares about my health!
Take care of yourself and let us know how you are doing....
-Pam

[Anne in Va]

Hi Pam,

First of all congratulations on the longevity of your transplant. That is so wonderful. I pray that this soon may become the norm for all transplantees.

You are so right! Statistics are only numbers. At best they can only indicate odds or trends. What matters is the individual and nobody can predict an individual's course or response. As you said, this board is full of those defying the odds. When I was five the doctors told my parents to take me home and make my last few days happy ones. This was in the days before dialysis and transplants! Well, I am now fifty-three. I went on PD at fifty-one and had a transplant six months ago. I am still alive and kicking and intend, God willing, to be kicking up my heels for many years to come!

[Pam]

Thanks, Anne...you are certainly right...the doctors do not know everything despite the impression they sometimes give! You have been on this "kidney roller coaster " a long time-glad you are still "alive and kicking"!
Love,
Pam

[Rachel in NY]

Hi.. my kidney (cadaverous )I was a 6 out of 6 match, interestingly enough. My dr. says it was like a kidney from an identical twin - which I don't have. I happened to have been on the list for a year, but even if I had been on the tx l ist for a DAY - I would have gotten that kidney. It was a "perfect match" to me, and in such cases, normal protocal is bypassed and it goes straight to the "match". It did lead me to question my parents as to whether or not I was born with a twin, and then maybe separated at birth? She assures me that that was not the case. The only way I'd be sure about that is when I find out more about my donor, and meet/write to my donor family. heheheh

Anyway, so regarding statistics and all that, as Cheryl said, its just numbers & trends. I had a small bout of rejection a week or so after my tx, i was treated with meds & stuff and it was reversed. 6 months later I had another rejection episode, and again, was treated with 2 rounds of OKT3, and everything is back in order.

Other then that, my kidney is doing great... but the point is - if I had "such a close match", then should this not have happened? Had I only had 3 or 4 stuff matching, would that have meant that I would have long rejected? ???!!!??? questions questions, and no answers. Thats statistics for you.

ITs good that you have 2 potential donors, and I'm sure after more testing, your dr. will determine who is a better 'fit' for you. Its great though that you've got 2. And in the near future you will be transplanted, and on the way to enjoying great health eh? Good luck... and keep us posted abt stuff.

-Rachel