Ask the bone marrow courier

Miscellaneous and Personal Stuff I Must Share
1

I’ve found many of the “Ask the …” threads to be very informative and I’ve always lamented the fact that my “Ask the Medical Writer” thread would be very boring.

But then I thought about one of the occasional (and I hope, interesting) perks of my job. You see, 4-5 times a year, I am called upon to transport fresh bone marrow to patients all around the world.

<advertisement> You see, I work at the headquarters of the National Marrow Donor Program, which operates the national registry of volunteer bone marrow donors in the United States. </advertisement> As such, I am trained to carry freshly harvested bone marrow from donors and whisk it away to awaiting patients. For example, late last month I picked up marrow from a hospital in Nürnberg, Germany and transported it to Kansas City, Missouri, U.S.A.

I’ll provide the basics, and then open it up for questions.

Basically, if you’re unfortunate enough to ever need a bone marrow transplant (think leukemia), you’ll need to find a very precisely matched donor. It’s not as simple as marching blood types – we’re talking about matching an entire immune system. If you’re lucky, you have a matching sibling or parent who can donate. If not, you need to find an unrelated donor and that’s essentially playing a huge numbers game. For that reason, bone marrow registries around the world recruit as many potential donors as possible (e.g., my organization has nearly 5 million volunteers).

So, we find matches for patients from all around the world who search our registry. Similarly, patients in the U.S. find matches in foreign registries. In other words, there is a lot of bone marrow being collected and flown all around the world. If you’re a frequent flyer, you may have actually sat next to a courier. We’re supposed to be discreet, but on almost every trip, I’m asked what I have in the cooler. I usually say “medicine,” which is a good answer, I think, because 1) it’s true, and 2) it doesn’t raise as many eyebrows as “freshly harvested human tissue.”

BTW here’s my response to the most commonly asked question. No, you don’t need to die first to donate bone marrow. We want live donors, and it only takes about a week for your body to replace what we take out.

So … ask away.

2

What percent of people who are on the registry decline, when push comes to shove?

3

Are you in the registry too?

How quickly does the marrow have to get to it’s intended recipient? (what’s the shelf life I guess is my question)

Where’s the most exotic place you’ve gone to pick up/drop off?

4

When a volunteer donor is notified that s/he is a match for a patient, s/he receives a detailed description of the entire donation process. This includes information on the anesthesia required, the process of extracting the marrow, the risk of complications, what to expect regarding pain, and the time commitment required.

The potential donor is also given a physical examination and must answer a health questionnaire to determine whether s/he is healthy enough to donate. (We ask even tougher/more embarrassing questions than those asked of potential blood donors.) The physical exam and questionnaire eliminate about 10% of the potential donors. After learning the details of the procedure, about 20% decline to donate.

All in all, if a patient is told that s/he has one matched potential donor on our registry, there is about a 60% chance that that particular potential donor is willing and able to donate. Those aren’t great odds, but most patients find two or more potentially matched donors on the registry, so if choice number one falls through, there is usually a back-up donor to be tried.

BTW, there is a process in place now where we can get the cells we need without using anesthesia and needles to poke though your bones and suck out the marrow. For about six years now, we have given some donors a drug that forces the cells we need to move from the marrow into the circulating blood. The advantage of this method is that it dispenses with the need for needles and anesthesia, but it does entail taking a powerful drug that is not without its side effects. Plus, collection requires one or two days of sitting down for 3-4 hours at a time while an apheresis machine filters out the cells we need.

5

I noticed that most of the recruitment centers seem to work mostly with minority communities (especially Asian Pacific Islanders). Does this mean that Caucasians aren’t encouraged to go to those centers? Or doesn’t it matter to which center ones goes?

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Yes. I signed up six years ago when I took this job. Have yet to be contacted about donating, but I’m staying healthy just in case.

For domestic trips (patient and donor both in the U.S.), we shoot for under 12 hours. This is usually very easily accomplished, even with the current state of the airline industry.

For international trips (those involving either a non-U.S. donor or a non-U.S. recipient), we shoot for under 24 hours. In these cases, we usually put one or two frozen gell packs in the cooler to slightly chill the product and extend its shelf-life. The toughest trips we make are those to/from Australia, where we come mighty close to that 24-hour deadline.

In extreme cases, such as when a courier misses a critical flight (such as the last transatlantic flight for the day), we may try to find a nearby hospital or medical laboratory willing to freeze the marrow and keep it overnight. Not a great situation, but it’s better than nothing.

My favorite trip was a pick up in Dresden, Germany. I’m a history buff, so I really liked kicking around that historic city. For the same reason, my recent trip to Nürnberg was very interesting, too.

We have connections all over the world, and the cooperation between the U.S. registry and other national registries is very strong. So, there is the possibility that I could someday travel to places such as Singapore, Japan, Taiwan, Australia, China, Poland, the Czech Republic, Brazil, South Africa, and Argentina, to name a few possibilities.

So far, my international trips have been limited to Europe, but I’ve been to many interesting places. My list so far: London, Stockholm, Leiden, Milan, Düsseldorf, Freiburg, and the aforementioned Nürnberg and Dresden.

7

I’ve heard donating is VERY painful. But I’ve never heard it described (the process). Do you have details on the whole process and the pain involved? (I actually heard it hurts more to donate than to receive).

8

Are there non-relative donors?

Is this common?

How do you locate volunteers that “match”?

If I wanted to volunteer, would I be liable for costs?

Where do I go for info?

Linky-links?

9

The link was in the OP: http://www.marrow.org

I noticed that one question on the site regarded the cost - there’s no cost to the donor, as the patient (or patient’s insurance) pays for it all.

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First, it does matter what center you go to, but only because you want to go to the center that’s most convenient to you. If you ever do get asked to donate, the donor education and the health questionnaire and physical exam will be done through that center, so choose the one that’s closest to you. (Or the one with the friendlier nurses … whatever floats your boat.) Anyway, many people in the U.S. have only one nearby donor center – only people in the larger metropolitan areas have a choice.

Second, the issue of recruiting minority donors. Yes, the National Marrow Donor Program (NMDP) has begun several initiatives to increase the number of volunteer donors from racial and ethnic minority groups. That’s because a patient is most likely to find a matched donor within his or her own racial or ethnic group. That is not to say that a Black patient searching the NMDP Registry will only find a matched donor who is also Black. Cross-racial matching happens all the time, but on average a same-race match is more likely.

We want every patient searching our registry to find a matched donor, so to achieve this goal it makes sense to recruit racial and ethnic minorities. Therefore, the NMDP has special incentives to recruit Blacks, Hispanics, American Indians/Alaska Natives, and Asian/Pacific Islanders. We have no such special programs to recruit whites, but a white person can join at any one of our 90+ affiliated centers throughout the world, even at a center that is specifically recruiting volunteers from a minority racial or ethnic group.

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Ah, that sounds good. I’ll check the various sites and see if any have scheduled drives in this area.

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What percent of people in the database ever match somebody?

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Spiff I’m so pleased to “meet” you!!

I’ve been on the registry since 1988 and I think it’s strange I’ve never been matched to anyone. But I am ready and willing and waiting should there ever be the need. I know I am in the system; I donate platelets regularly (just completed my 50th donation! there’d be more but I had to take several years off during the Pregnant and Nursing Years.)

Anyway, I’m glad to know someone who works at the National Marrow Donor Program. I read the newsletter avidly when it arrives. :slight_smile:

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What kind of training is involved? I’m sure this is one of those times when it’s harder than it sounds.

The son of a good friend recently went through leukemia treatment using an umbilical cord. Are you involved with that too?

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This is a difficult question to answer, because pain is subjective. However, the actual incisions to extract the marrow are done under general anesthesia (about 80% of the time) or under spinal/epidural anesthesia (20%). So you don’t actually feel a thing during the harvest.

Harvest is usually done in the morning, and you are discharged from the hospital anywhere from noon to the end of the day. You probably won’t want to go to work the next day, as your butt will be tender. Donors typically take over-the-counter pain relievers (aspirin, acetaminophen, ibuprofen, etc.) for a few days and are fine. Rarely does a donor have to stay in the hospital overnight, and most can return to a desk job after 1-2 days. Someone who digs ditches for a living may want to take a little more time off.

Here’s an excerpt from the abstract of a 1993 article that appeared in the medical journal Blood:

(From: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8461478&dopt=Abstract )

So, most folks recover right away, but one in ten take longer.

Is receiving more or less painful than donating? I’d say being a patient with leukemia, lymphoma, or aplastic anemia is more painful …

The best source for details on the donation process can be found here:

http://www.marrow.org/DONOR/steps_of_donation.html

16

Thanks for your response. I’d assume the disease is more painful than the cure, but the actual receipt of the bone marrow…how do they do that, and is it painful? How long does it take to start feeling the results?

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I just wanted to say that this thread’s made me strongly consider being a donor. I’ll consult with one of the local centers and proceed from there.

18

I’m also considering it. Thanks for the good information!

19

dantheman answered some of your questions.

The NMDP’s whole raison d’être is to find matched unrelated donors for patients who do not have a matching donor in their family. We have coordinated more than 16,000 transplants between unrelated patients and donors in our 16 years of existence. I think that’s fairly common. The registries in other countries have also done a fair share of transplants, too.

While I’ve got these numbers out, I’ll give a rough answer to bup’s percentage question. We have nearly 5 million volunteers on the NMDP Registry, and we’ve done 16,000+ transplants. Dividing one number into the other, we come up with about 1 in 310 volunteers in our Registry have donated, or about 0.33%. (Very few are called, in other words …)

As dantheman related, there is no financial burden to the donor. We bill the patient’s hospital for all costs of the marrow collection, including the donor’s education session, blood tests, and the physical exam and health questionnaire.

How is matching done? At the time that a volunteer joins the NMDP Registry, we take a blood sample that is sent off to a lab for testing. The lab “tissue types” the volunteer’s blood and delivers the results to us. A “tissue typing” entails determining six (sometimes more) key immune system markers that are considered the most important in determining whether a recipient’s immune system will be able to accept the donated marrow. It involves studying certain proteins that are on the surface of every cell in the body. These special proteins (and there are hundreds of them on each cell) allow the body’s immune system to determine which cells belong in the body and which are foreign.

We enter the volunteer’s tissue typing results into our database. When a physician searches our database on behalf of a patient, the patient’s tissue type is compared to the tissue type of every single volunteer in our Registry. With nearly 5 million volunteers on the Registry, you can guess that the computing power required to do this is immense. Fully one-third of my co-workers are computer types.

20

Kalhoun, According to my understanding, they just put the bone marrow (or the cells from it) in intravenously. The cells then migrate to the marrow and do their thing.