Tag Archives: causes

Join the bone marrow registry from your couch

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A couple of weeks ago I read about a shot-putter at University of New Hampshire named Cameron Lyle. He is giving bone marrow to a critically ill 28-year-old; unfortunately because he is a senior, donation will end his shot-putting career at the school. I’m glad to hear that the guy didn’t even think of it as a question. He knew he had to donate.

Lyle was found for donation because he was in the bone marrow donor registry, as part of a drive run by UNH. I was really glad to hear this. Perhaps I just don’t get out enough, but at my two universities, I’ve never heard of such things.

How to join

In this post, I wanted to make sure that people knew that it is so easy to join the registry at marrow.org. It’s free (if you are under age 45), and involves no needles unless you match, which happens for about 1 in 540 people. You sign up on the marrow.org website. This is basically giving them your address, and a contact’s address so they don’t lose you in the future. A pack of q-tips come in the mail. You swab them in your cheeks, and send them back. And then you’re in the registry.

What to expect if you get selected, from my experience

I donated marrow several years ago to a family member. Most times, but not always, stem cells are induced into the bloodstream through a series of shots. Then when the stem cells are in your blood, you hook up to a machine which takes the stem cells out and puts the rest of your blood back in you. That separation process is called pheresis, and if you’ve ever given plasma, it’s a similar procedure. An out needle in one arm, and an in needle in the other. The biggest problem with this method, as one who experienced it, is using the restroom, because they want you well-hydrated and it takes a while. For young people, the stem-cell shots can cause some aches. I turned into the princess and the pea, sleeping on all the pillows in my house for a couple of days, but apparently that isn’t typical.

Sometimes they still do the old-fashioned big needle in the hip bone marrow transplant method. They often show this procedure on TV shows, but it’s less common than the stem cell donation I described above. It sounds like the shot-putter might be doing a marrow transplant, which would explain why he can’t shot put for a few weeks.

The point

But basically, it something that you can do for free with very little inconvenience. In the unlikely event you get selected, it’s still not terribly involved. Minorities and people of mixed background are especially needed. There are FAQs and other info at marrow.org, too. Hopefully this will give you the info and motivation to join the registry, or encourage others to join.

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Why you should join the bone marrow registry

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Tomorrow my brother Brian would have turned 31. When he was 25, he died of leukemia. I was his bone marrow donor.

He was a quiet and smart person. He was working on his doctorate in computer engineering when he got his diagnosis. He liked computer gaming and anime and was a complete geek without caring at all about the designation. He first introduced me to chaos when I was in high school by showing me the logistic map. “That’s nice,” I said, and went on to other things, only to take up research in the field after his death. He played racquetball somewhat poorly; he was too laid back and unaggressive to play as boldly as the game required. He wore Hawaiian shirts and shorts year round. He liked to be different and to ignore the puzzlement of others. He once had a bad review as a TA because he failed to button his shirt. He was 6’5″ and looked like a viking.

When he got sick he lost his hair and his burliness. He didn’t complain. I donated marrow stem cells once, and some other cell in a similar procedure another time. I complained a lot. He kept trying to work on his research. His greatest vexations in the hospital were getting switched rooms constantly and the poor quality of internet access. When things went bad he entered hospice, again, without drama. His gums would bleed, he was covered with bruises and he hallucinated often. It never broke his spirit. He kept watching anime and kept playing computer games and didn’t complain. He was obviously often upset; once when they made him switch rooms he was so frazzled he cried. But he didn’t complain and he did his best to be helpful to the nurses and document his medication well. Leukemia does not define my memories of my brother but it certainly curtailed them.

Not everyone has the luck to have a bone marrow donor when they need one.  When I was matched with my brother, I was told there is only a 25% likelihood of matching for each pair of siblings. The odds of matching go down significantly beyond sibling relationships. A little less than 50% of marrow donations in 2006 came from a non family member. Matches can be especially hard to find for minorities. We need more donors.

So join the bone marrow registry at marrow.org. It is totally free to join, and you are eligible if you are between 18 and 60 (I tried to look if this extends beyond the US; it should, but I couldn’t find it on their website). They will send you a free kit with several q-tips. You swab your cheeks with the q-tips and then send them back.

There is a 1 in 540 chance you will be selected to donate, but even then, you are not required to do so. When you donate, they sometimes still draw marrow from the hip like you may have seen in TV shows. More often, the donor is given a drug for several days that causes marrow stem cells to circulate in the blood stream. Then they draw blood and separate out those stem cells, and put the rest back. It’s a lot like giving blood except the procedure takes a few hours. If you have more questions, marrow.org has a lot of helpful information. Please join, and thanks!