A qustion for Qadgop, or any of the other doctors on the board.
Seems im a potential match for some poor soul who needs a marrow transplant.
I now need to give a blood sample to ‘check the HLA match’.
What’s a HLA match?
If after that it turns out I am indeed a match then I get to go to hospital, go under General Anaesthetic and have between 500-1000ml of bone marrow taken out of my hip bones. Apparently ‘the procedure causes no serious harm but you will feel a little uncomfortable for a few days’
a little uncomfortable in what way exactly? are we talking soreness around the hip area? Also how big is this needle? does it punch through the bone or get in some other way?
also
Will there be any short term degradation of my immune system due to the missing marrow (until my body replaces it anyway).
Assuming I’m a match i AM going to do this, no need to worry about putting me off with graphic answers.
In my ignorance i had imagined they just jabbed a needle in once, and sucked out the marrow. I can see where i am gonna need up to 5 days to recover if they’re sticking it in several times.
HLA is the gene that is responsible for immunocompatibility. If you and a recipient have an HLA match, the transplant is more likely to take and not be rejected. The lab I work in does a lot of these genetic tests, though they’re not done in my department, so I don’t know a lot of the details.
Bone marrow is a lot like blood in consistency. When we get a tube in the lab, it can be hard to tell them apart visually. Bone marrow usually seems to have little chunks in it and is a slightly different color.
HLA is a gene family that produces proteins the body uses as “tags” to recognize its own cells and keep the immune system from destroying them. There are six major HLA genes, and each person has 2 copies of each gene (which may be non-identical copies), for a total of 12 major HLA genes total. The more of those genes that are identical between the donor and recipient, the better the transplant will work.
The needle is just a bit bigger in diameter than the ones used to draw blood when you donate blood for a blood drive. The needle is indeed driven through the bone to get the marrow; they do several punctures on each side of your hip bones to get enough marrow for the transplant. Your butt is going to be bruised and sore for a couple days afterwards, like you’ve taken a hard fall.
No. The procedure will not affect your immune system in any way.
If I may jump in with a relevant question of my own…
My wife and I have both in a Bone Marrow donor registry for about 12 years. Both of us have been called in for additional testing for a potential match, but did not get called back.
So, is this HLA testing something that goes “on the record” for a donor, or is it something that has to be matched up for each potential recipient? In other words, if I’m a possible match for someone, would they call me for another blood sample, or just check the records from the last time?
For reasons of cost, they don’t do a full HLA testing panel when a person is initially added to the registry, but an abbreviated one. If the person is later identifed as a potential match, then that person is called in for a full-scale workup to determine whether or not they are indeed a good match for the potential recipient. The results of the more detailed test will stay in the registry’s file, but because the testing methods are improving all the time (becoming more able to pick out subtle but important differences between HLA proteins the earlier tests would have classified as “identical”) and as a safeguard against clerical mishaps, those tests would definitely be repeated if the donor was ever called up again as a possible match for another recipient.
These are actually the proteins on the surface of white blood cell and other tissues. They’re coded for by genes which are inherited from your parents. Which is why you’ll get a closer HLA match from relatives usually, than from a stranger.
I’ve been on the panel for 10 years, this is the first time i’ve been a potential match. Is there any way of knowing what the odds of my being potential match becoming my being a confirmed match are? I’m going to give a blood sample this afternoon. How long does an HLA analysis take? days or weeks?
The confirmatory HLA testing will be done in a day or two. Then the physicians at the transplant program where the would-be marrow recipient is located will look at the results and decide which of the prospective donors is the best match. So you’ll know very soon if you’re the one.
Can’t tell you the odds of you’re being a confirmed match, unfortunately.
As the donor, can you try to set a time. I mean, could you say, “Well, I’ve got some big meetings at work this week that I CAN’T miss, could we do it Monday morning?” Or is this something where even a day could make the difference for the person recieving the donation?
Will they pay for missed work time. Not to be selfish, but I live paycheck to paycheck and if I had to miss 5 days I’d be screwed, but this sounds like a really great thing I could do for someone sometime. Who knows, maybe I’d be able to help someone out.
[QUOTE=whatami]
I’m curious about a couple of things now.
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The literature I have (from the Anthony Nolan Foundation) says
‘As a donor you may incur travel and other expenses, perhaps loss of earnings. We will reimburse any reasonable loss and your expenses in full’.
For the other thing, I don’t have enough info to say. Once a date has been agreed though you’d better stick to it I gather
‘Once you have given consent you can then withdraw from the procedure without giving a reason for up to 10 days before the donation. You must however, give a written undertaking to complete the marrow donation procedure BEFORE the patient begins their preparation. This is because the treatment given to a patient in this period destroys their own bone marrow and immune system and without a transplant they may not recover’
This is not to say however that you don’t get any say at all in the initial setting of the date. I dare say it is different in each case.
It also depends on what technique is being used to collect the transplant material from the donor. There’s a bit more wriggle room when the doner is giving bone marrow, as there’s no preparation needed on the donor’s part. However, stem cells (the cells in your bone marrow that give rise to your red and white blood cells) can also be collected from peripheral blood, by hooking the donor up to a special machine to siphon them off. That method of collection requires the donor to undergo a series of preparatory drug injections that starts his/her bone marrow pumping out stem cells at a tremendously accelerated rate, and the collection must be done at the point when the donor’s white blood cell count is peaking. So obviously once the injection series is started there’s little opportunity to change the collection date.