Friday, July 8, 2011

Marrow Donation

This post has now been edited for accuracy. I thought bone marrow donation was just like doing a marrow biopsy. Oops, NOT. It's still nothing like donating an organ, and it's described fully--and now more accurately--below.

I'm posting this for two reasons:

  • Friends and family have asked
  • Marrow donation is a GREAT IDEA

I've been reading about marrow donation since my life now depends on it (or an intrusive miracle by God, which he has not told me he's going to do).

Testing is apparently expensive. My insurance has given Vanderbilt permission to test my two brothers and my sister for a match. That's it. No one else.

After that they go to the national marrow donor database. You can sign up for that at marrow.org. The wonderful thing about the National Marrow Donor Program is that they pay most of the expenses through donations. They test THE CELLS FROM A CHEEK SWAB to get the DNA information they need to match you to a recipient.

Yeah, all it takes is a cheek swab!

Marrow.org's faq says there is "sometimes" a cost of up to $100 associated with being typed. My sister called, though, and it is currently (July 8, 2011) free. That is apparently affected by the financial donations they do or do not receive.



Let me give a link to GiftOfLife.org too. They do bone marrow donor drives.

As it turns out, matching for marrow has nothing to do with blood type, but it can also have little to do with being biologically related!

Can you imagine?

It has more to do with race. I'm exactly the same race as my full brothers and sisters. But my children?

Think of it this way. My dad is full-blooded Portuguese. The most likely match for him is another full-blooded Portuguese, which I am not. My mother is German and Dutch. I'm only half Portuguese, and thus I'm a bad match for my dad. I'm not only not better than others in the general population, I'm worse.

There's some overlap between my wife and I in race, so the fact that they have my very DNA might help with my children, but there's plenty of Indian and Irish in her as well, which I probably have none of.

So, the best way to try to help me, if you want to give marrow, is to sign up at marrow. org. You have to agree to help anyone who needs help, not just me, but otherwise you're paying for all the testing yourself, and that's expensive. The National Bone Marrow Donor Program will help pay, but only if you offer your bone marrow to anyone.



And Here's Why You Should


  • Bone Marrow's easy to give.
  • Only 1 in 540 people in the program will ever be asked to give anyway.
  • Those in need of bone marrow have only a 54% chance, on average, of finding a matching donor.

If you love me, it's true that the person you're called for may not be me. On the other hand, someone loves that person, and I'm quite likely to have to depend on the kindness of some stranger who heard about marrow.org and chose to spend $100 to be tested to be a donor.

If we were to double the size of the donor data base, who knows how much higher than 54% we could go on finding a match that might save someone's life ... like mine!

How many people do you know who are registered, tested marrow donors?

I don't know any. What if we tripled or increased the database by 10 times? I'll bet we'd get that matching ratio up a lot closer to 100%.

And it would still only be a few who actually had to give in a process that's less painful and trying than most dental procedures.

I don't think marrow donation gets the kind of publicity that blood donation gets ... nor the publicity it ought to get.



Giving Bone Marrow Is Easy (Adjusted ... Still not bad)

Marrow.org's description is here.

Basically, if you happen to get chosen to give bone marrow, which is a 1 in 500 shot or so, then you'll have blood drawn to confirm the match. The National Marrow Donor Program will help you set that up, and then they will reimburse travel expenses if you're really a match.

The procedure is to put you to sleep, though it's possible local anesthetic will be used, and a number of small holes will be made into your pelvis. About a liter of liquid bone marrow--less than 10% of what's in your body--will be drawn out.

They take that liquid bone marrow, inject it into the blood of the recipient, and it multiplies itself, replacing all that person's bone marrow and begins making new blood of YOUR blood type. In fact, over time, the recipient's DNA will become a match for yours, though the nurse here tells me that won't change the way the recipient looks, talks, or acts.

Okay, excuse the modern lingo, but is that totally cool--and a little freaky--or what?

The effect on you? I'm told it feels like a mule kicked you in the backside, and the soreness lasts about a week. In other words, it's a real pain in the butt for about a week, but you'll have saved a life! (And the life you save could be my own!)

Long term effect is none. Your body takes 4-6 weeks to replace the bone marrow.

The thing to keep in mind is that they can also simply give you a growth hormone for 5 days that causes the bone marrow to make so many stem cells that your blood begins to carry enough for a transplant. Then they just draw your blood, harvest the stem cells, and inject those in the recipient.

If they do that, then the growth hormone may give you headaches or other minor side effects for the 5 days you take it, but the donation will simply involve drawing blood!

4 comments:

  1. Paul, I just wanted to correct something.

    If you go through the marrow.org, there is no cost to one the donating, if you make yourself available to anyone and everyone.

    Not sure where the $100 comes in, but I have called them and asked, there is no cost. I sent for my kit with them last week. It should be coming to me sometime next week.

    Love ya

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  2. Sounds like I may not be your match but I signed up anyway. Thanks for the info, it'll save lives.

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  3. My blog post dedicated to my cousin Paul.
    http://uniqueedtechie.blogspot.com/2011/07/what-my-cousin-is-doing-with-his.html
    Thanks for sharing and educating us. Know that you are in our thoughts and prayers!

    ReplyDelete
  4. Thanks, Lisa! You signed a different comment "one of your many cousins," but actually my mom and your mom have always seen a lot of each other, so your mom has kept me up on your life story--and Martin's, but especially yours--more than most of my cousins.

    ReplyDelete