First of all, I want to thank everyone that has liked my posts on facebook or here, commented here or there, shared, spread word of, or otherwise helped get my story out to where it might reach someone it could help. It’s meant a lot to me that people seem to be enjoying my story, and learning.
A lot of you have also been asking more about the stem cell transplant, so I figured I’d do another post specifically about the donation process, what it entails, how you sign up, etc. etc. etc. This will also serve as an easy place to point people for a short (I mean, for me), concise summary of the entire deal. I also wanted to highlight a certain friend’s efforts, just as a “thanks”. Also, my sister is going to be hosting a marrow donation/sign up party/thing in the future, which I’ll post more details about for those readers who live in the Westchester area. Let’s get to it!
First and foremost: You can back out of this process at ANY point. It is always a choice, and you are always able to remove yourself from the registry if you ever decide you don’t want to be a donor anymore. So if you ever change your mind, no harm, no foul. Though, if I found out I was your match, and you declined donation…I’d probably come harvest your marrow myself. With a spoon. Just sayin’. (Yes I re-used a joke. Shuttup.)
Why could my bone marrow be useful?
If you’re between the ages of 18 and 44, and have otherwise healthy blood (if you have to ask here, you’re fine), your marrow could be used to save somebody’s life. There are lots of disorders out there where somebody’s bone marrow isn’t producing the correct balance of blood products, and the only way to fix it is to give them a new blood factory – your bone marrow.
For me, specifically, my leukemia means that my white blood cells are messed up. It could be other things though.
The main issue is that every body out there has a different mix of the *specific* type of bone marrow they have. Think blood type, only with like 10 different variables that have to match, instead of just 2.
Oh, and everyone’s particular bone marrow type is as rare as O- blood.
So it’s really a numbers game. Of the roughly 311 million people in the US, we only have about 8 or so million registered donors. In the whole wide world, there’s only about 20 million people registered. So instead of being able to look at multiple billion potential matches, we’re only talking about 20 million. And, for the most part, it runs along the lines of similar ethnic backgrounds. So take that 20 million, and take the percentage of people in the world that represent your ethnicity, and there you have your match pool.
The more people that are signed up and in the registry, the better the chances that someone’s life can be saved. It could even be mine!
Also, I want to highlight something if you are an ethnic minority (any), or know someone who is, PLEASE PLEASE PLEASE SIGN UP. I don’t know how to say this in a PC fashion, but straight up, ethnic minorities are wildly underrepresented in an already under-filled population of potential donors. Here are some sobering facts:
20% of caucasians in need of a transplant die before a match is found. Seems pretty shitty, no?
70% (or more) of ethnic minorities in need of a transplant die before a match is found. That is absurd. (These stats, and others, found here).
Side note: potential parents, please consider donating your baby’s umbilical cord to the bone marrow registry. It can also be used in the same way for this process, and it doesn’t even require you to do anything other than donate it at the time of birth. If you have questions about this, feel free to contact me and I’d be happy to answer any of them.
How do I give my marrow?
I think a lot of people are under the impression that donating bone marrow sucks something fierce. I know that I definitely thought it involved a painful procedure, days of rest, and basically, was just generally unpleasant. I will say, somewhat ashamed, that that prevented me from signing up in the past.
Luckily, I could not have been more wrong. 70% or more of the donations done are done using a method I’ll describe below. The other one is generally only used to save very young at risk children, who tend to do better with straight marrow transplants as opposed to stem cells. And remember, at any time, you can say “no thanks” and walk away. Don’t forget about the spoon, though.
The short version – you show up at the hospital, doctor’s office, or marrow clinic that’s nearest to you. They give you a shot that you self-administer (or if you’re squeemish, you can have a nurse administer for you). It’s a tiny tiny little needle, and you do it for 5 days. This shot stimulates your bone marrow so that it releases stem cells into your blood stream.
After the 5 day course, you go into qualified donation place (hematology ward, hospital, cancer center, among other options), and they hook you up to an IV in each arm. One IV takes blood out, into a machine where they filter out the stem cells, and then it goes into the second IV, which pumps the blood back in. So if you get faint giving blood – no worries! You only technically lose blood for the first portion of the process, while the first bits of blood are being filtered in the machine. It might last a minute or two? And then you get all your lovely healthy blood back, free of issue.
That’s it. No big scary bone piercing needles. No pain (except 2 pinches). No recovery time. Just a couple of hours spent at the hospital.
Probably the easiest way to save a life that I’ve ever heard of. Here’s an image I found from BeTheMatch that illustrates what I’m talking about:
Ok, you convinced me. How do I sign up?
Also super easy! You go here.
Fill out the info on the page, and click “go”, and follow the rest of the directions. A few days later, a package will show up that looks like this:
You take 2 swabs and swab the top and bottom of the inside of your right cheek, then 2 swabs for the left cheek. Here is my lovely friend Christine, demonstrating the proper form:
Then you label the swabs with your info, put them in the previously mentioned envelope thingy, and mail it away.
How do I find out if I match <fill in important person in your life who needs marrow>?
If you register with Be The Match (formerly the National Marrow Donor Program (NMDP)), you are put in a database that any hospital in the US can access. I’m not 100% sure for international hospitals, but I know that US hospitals can also search the international database, so I’m assuming that goes the same for international folks.
My team is currently looking on a day-to-day basis to find a perfect match for me. Thousands of people sign up every day, so there’s certainly a chance that by the time I’m ready to receive a stem cell (should I go that way) transplant, I might even get a donor lined up. Your loved one is probably in a similar boat. If you join the registry, and you’re a match, you will be getting a phone call from the hospital probably pretty quickly.
I’m not kidding when I say this is most likely the easiest way to save somebody’s life out there. It’s virtually pain free, you can sign up from the comfort of your own home, and as simple as that, you can be the life saving provider of marrow for a lucky person out there.
That being said, I’d like to give a nice shout out to Christine, pictured above. A lot of you out there have gotten some folks to sign up, and for that, I (and whoever receives their marrow, if needed) am eternally grateful. Christine, though, I think is currently leading the pack at a total of 9 confirmed additions to the registry (not including herself). Think you can do better? Let me know how many you’ve gotten and we can get a little competition going!
May the best hero win :D