What Would You Do If Someone You Love Needed A Bone Marrow Transplant?
I want to talk to you about something really important. Let’s say you were really, really sick and about to die, but there was one hope for you to survive and that was something called “bone marrow.” Except there was a problem: there was no bone marrow. There was no bone marrow because people are scared of needles and because of that you will probably die. Not cool, right?
I’ve been learning a WHOLE lot about bone marrow because my Dad has a very rare form of cancer called Myleofibrosis and actually has no bone marrow. His has all dried up and his body isn’t producing blood. And I’m terrified for him. This is my Dad. I don’t want him to go anywhere. So I’ve been doing what a lot of people do when they don’t know what else to do- I’ve been reading and calling doctors and staying up all night trying to find the miracle treatment for my dad. Needing bone marrow is like needing a kidney. It’s a long wait with no guarantee it’ll ever come. My Dad was one of the lucky ones who had a virtually perfect bone marrow donor match. His match is a 24 year old man from Germany and my Dad’s transplant took place a week ago today. My Dad is tired and weak, but doing well as far as the doctors can tell. It’ll be about six months before we know if the transplant took. My parents tell me that their doctors say there aren’t enough bone marrow donors here in the United States to care for our own. Most of our donors come from other countries, as my Dad’s did.
The more I talk to people about being a bone marrow donor, the more frustrated I get. There’s a major and urgent need for bone marrow and yet nobody really knows anything about it. And there are a lot of myths that scare people away. So I’m going to dispel some of those myths right now.
Myth #1: You must go to a clinic to get tested and it involves a Goliath of a needle scary enough to make grown men cry. I hear this all the time and it’s not true. It all starts with a simple swab test. You send away for the kit, it comes in the mail, you swab your cheeks and send it off and they add you to the database. Of course there will be needles eventually. How else will they get the bone marrow out of you? But that doesn’t come until much later. And if you’ve survived an epidural and child birth you’re gonna be just fine with the procedure.
Myth #2- It costs an arm and a leg to donation if you end up being a match and it does funky things with your medical insurance. Actually, no. If you register to be a bone marrow donor with the National Marrow Donor Program, they won’t pay you for your marrow, but they’ll cover medical costs, reimburse all travel costs and provide other assistance as well. Can’t promise your boss will be so cool with giving you time off to save a life, but if they’re jerks about it, shame on them.
Myth #3- Once registered to be a bone marrow donor you can’t change your mind and if you’re a match you’ll be hunted down and forced to go through the procedure. As far as I know, we still live in a free country. And while I think it’d be pretty crummy of you to be a match for someone and then back out, it’s still your choice. If you change your mind that’s cool. But what’s not cool is dodging calls from the registry. If you’re a match for someone and you don’t have the guts to tell them you don’t want to donate, they won’t know to start looking for another donor right away and you can really put the person in need at risk of losing their life.
Here are the two ways a person can donate bone marrow according to the National Marrow Donor Program:
PBSC Donation (this is the procedure my Dad just had last week):
Peripheral blood stem cell donation is the most common form of donating. This is a non-surgical procedure (yay!). For 5 days before donation, the donor receives daily injections of a drug that increases blood forming cells in the bloodstream. On the 5th day, the donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood forming cells. The remaining blood is returned to the donor through the other arm. Donors may experience headache, bone or muscle aches for several days before collection. These side effects typically disappear shortly after donation within 1 to 2 days.
Yeah- this is the one that people don’t like too much, but suck it up buttercup! You’re saving a life! Marrow donation is a surgical procedure. While the donor is under anesthesia, the doctor uses needles to withdraw liquid marrow from the back of the pelvic bone. After donation, marrow donors can expect to feel some soreness in the lower back for a few days to several weeks. Marrow donors are typically back to their usual routine in 2 to 7 days.
Registering to be a bone marrow donor literally only takes a few minutes and in the end you could help save a life. So the next time you see your doctor ask if he or she thinks you’re a good candidate to be a bone marrow donor and if so, ask how you can get registered. Who knows? You might up saving a life. A life like my Dad’s.