I just got a call from a bone marrow transplant center...

Miscellaneous and Personal Stuff I Must Share
21

They don’t actually have parts of you - they just tested your blood for a bunch of different antigens and now they have your type on file in a computer. Their system pulled you up as a match to someone.

Well, unless you gave them a chunk of liver to keep in a jar, or something.

Good on you for being a marrow donor. I would do it but I’m really, really chicken about it. I’ve been by the bedside for a bone marrow aspiration, to make slides for the lab, and I gotta say, it’s a pretty big needle! They freeze you and stuff, but I’m really just a big sissy. I’ll stick to donating blood, and being on the testing side of the process. I’m still helping!

Let us know how it goes!

22

As an employee of the National Marrow Donor Program, I can answer a few questions raised in this thread.

But first: Good on you, CutterJohn, for volunteering, and for keeping us up to date so we could find you after nine years.

I don’t think we have any “bits” of you lying around here in the office. :slight_smile:

Nine years ago, we either collected 50 ml of your blood in a vial, or pricked your finger and dabbed your blood on a special filter paper card. Either way, your blood sample was shipped off to an HLA lab to be tissue typed. When your HLA antigens were characterized, we entered them into our HUGE database (we have more than 7 million volunteers now!).

It was a computerized search of that volunteer donor registry that matched you to a searching patient.

That searching patient could be anywhere in the world. You were contacted by a center in Iowa because that’s the site that has your contact information. I presume because you registered with us through our local affiliate there.

Anyway, if you match and donate, you will stay local, and your cells will be whisked away to the awaiting patient.

As for why 4-6 months is mentioned, it’s probably because the patient has a slowly progressing disease, and not an acute disease such as one of the acute leukemias. So the patient’s doctors may be giving him or her chemotherapy or other drug therapy to get him or her in better shape for an eventual transplant. (Transplants do better when a patient is in remission.)

In any case, good for the patient’s doctors for planning in advance. We loose too many BMT recipients because the doctors wait too long to start a search of our unrelated donor registry, and it takes time, sometime lots of time, to find a matching donor (and test him or her, do a physical exam, do the necessary education/consent process, etc.).

Anyway, your next sample will probably be taken via a buccal swab, a Q-tip brushed against the inside of your cheek. (But it may also be blood … our procedures vary depending on several clinical factors.)

So, as far as donation choices… Yes, you can still get the needles in the hip, which takes bone marrow from your pelvic bones. You need some sort of anesthesia (general or spinal), and that’s a major concern for many donors. Plus, if you have any sort of lower back issues, then you don’t want to donate bone marrow (and we won’t let you) because punching the needles into your pelvis stresses your spine.

We can also give you the filgrastim that a poster mentioned. (We like to say that the drug *mobilizes *the stem cells in your bone marrow into the blood stream, not *squeezes *them!)

But anyway, filgrastim can cause moderate to severe nausea, headaches and bone pain. Most of the time this nausea/pain is low to moderate and it goes away in 1-2 days. But some donors don’t do well with this drug, and they experience lots of these side effects. But even though their experience is worse than usual, their side effects will also rapidly go away when you stop taking the drug.

So … donating either way requires making a serious medical decision (but we haven’t lost any of our 32,000 donors so far!). If you match and do decide to donate, you will be given an extensive physical exam and extensive education about both processes. (I think our consent form is about 12 pages long!)

So, sit tight CutterJohn, stay healthy, and if you match and decide to donate: Thank you. You could save someone’s life.

Spiff

23

Er … lose, not loose. :smack:

24

Oh, wow, Cutter John! How exciting! I’m in the registry, but I’ve never been called. A big hug to you for being willing to do this!

25

I just ordered my tissue type kit. Before I got pregnant with child no. two, I was on the track to becoming an ‘altruistic’ kidney donor. Now that the odds are higher that I may have to give up a kidney, I had to stop.

26

Interesting to read about the side effects to the drug…I’m probably up for stem cell transfusion within ten years, as it is the only way to cure the cancer I have. (With that nasty 25% chance of death from complications from the transplant, that is:rolleyes:) I only have a brother that is a full blood relative of mine, and he says he’s ready whenever I need it, but I’d like to give him all the info I can up front.

27

That doesn’t sound so bad when you consider what the recipient is going through, with no choice on their part.

Good for you, CutterJohn.

28

Hmm. I was going to register, but had heard that you had to pay to do so. I also had the impression that the test involved actual bone marrow and not just a blood sample. :confused:

29

Apparently not, follow the links in **gigi’s **post.

30

Looks like normally there is a fee of about $52 but this month there is a sponsor covering the fee.

I tried to register but encountered two problems:

  1. The terms and conditions still state that there is a fee involved. I was willing to fill out the forms and see if the fee gets waived anyway, even though this was somewhat confusing but…

  2. Like blood registries, they don’t like gay people.

Oh well.

31

Well can you blame them? I mean who want to catch teh gay?

32

A somewhat related but tangential question: due to prior illness (lymphoma) I’m now permanently deferred from giving blood; presumably I’d also be deferred from donating marrow, too – but does anyone know if this also means I can’t be an organ donor? I was on the state registry for many years, but they apparently completely changed the system database, and I’d have to re-register to be on it again. But if they wouldn’t take my organs, I might as well not re-register so they’re not wasting time with organs they can’t use anyway…

Also, just sayin’… I went through the pelvic tap for a bone marrow biopsy, and it hurts a whole effin’ lot. I have a very high pain tolerance, and was expecting it to hurt a lot, and had psyched myself up for it to hurt a lot, and I still screamed. I have a pretty vivid imagination and it still hurt way more than I could have imagined, by several orders of magnitude.

I also had to take Neulasta, which while it doesn’t have anything to do with marrow specifically, is a drug that ramps up production of white blood cells from bone marrow. It made me feel flu-ish and achey for a few days, and my bones ached, but it was still far preferable to me than the pelvic tap. I’ve had worse body aches from a stomach virus, or a bout of the flu.

33

There are one or two gays I’d like to catch.

34

According to the website, that’s a “myth”. I wonder about the accuracy of some their other info…

35

“Myth” my ass (literally, in this case). I can’t imagine my doc wouldn’t have opted for a painless procedure if one were available. He was an excellent doctor.

The needle doesn’t hurt going in – they do numb the skin the the hard part of the bone – but apparently there’s no way to numb the marrow/inside of the bone. It feels like a giant, intensely painful, sucking. And I only had to fill three slides from each hip. I imagine a donation would need more than that.

Ow ow ow. :eek:

On edit: well, if they’re suggesting that donors go under general anesthesia to donate, then yes, I imagine they feel nothing. I was awake for the procedure, since there are always risks with anesthesia. I for one respond badly to general. I do better under twilight sedation, although this was done entirely with Novocaine injections.

36

Missed the edit window:

I suppose they could have used a nerve block, but the idea was for me to be able to walk out of there with minimal recovery time, I think. It was outpatient and done in a sterile exam room, not a surgical suite. The times I was in same-day surgery required a lot more red tape, prep, and recovery, and I’d be there for at least half a day, if not a whole one.

37

Normally you pay for the testing kit - at this stage, it’s a cheek swab with a Q-tip, no marrow or blood needed. They mail the kit out, you swab your own cheek and follow the directions for returning it to them.

The website is a little misleading - the forms still ask for your credit card number for the kit cost. But you can just leave it blank and press NEXT and it will proceed with no charge to you - but only if you register before Nov 30!

Just registered myself. Thanks, gigi!

38

I was also a lab tech (the people who process marrow samples), and my understanding is that it hurts a friggin’ lot as well. They’re punching a pretty big needle into your bone - my guess is that it hurts something like breaking a bone. Um, not to discourage anyone or anything - just don’t go in thinking it’s like a flu shot.

39

Is it possible I was confused? Maybe they were referring to a different part of the procedure. One poster suggested maybe they took into account full anesthesia, but I remember them including local in the description. Is extraction for testing purposes less painful than extraction for purposes of actual donation?

It annoys me that they discriminate based on sexuality. It’s not like they aren’t going to test for HIV before actually going through with the extraction, and it’s not like there’s no heterosexuals with HIV.

40

Actually, punching the needle in didn’t hurt at all. I’d had multiple small hypos worth of Novocaine, so my skin felt nothing and the bone felt nothing. There was a weird sort of pressure, in the sense that I could clearly feel that my pelvis moved when the needle did, as if the needle was a handle.

The part that actually made me scream was when he pulled the plunger out to suck out the marrow. Apparently there’s no way to numb whatever nerves exist in the hollow insides of your bones. That part effin hurt like hell.

The “myths/facts” page says such:

So apparently during a needle aspiration donation, you’re either out cold, or you can’t feel or move the lower half of your body. (A “regional” anesthetic would be a nerve block, yes?) So, yeah, under those circumstances, I can see it not being painful. You won’t be walking out the door an hour later, though.