A lot of you have been asking me a lot of questions about joining the Be The Match Registry.
Since I’m on the other end of this equation, I turned to Stephanie Bluma, my lovely colleague from Weber Shandwick’s Social Impact team who is a veteran bone marrow donor. She is also one of several colleagues who star in this impactful new video from Weber Shandwick | Powell Tate about joining the Be The Match Registry (read Clare’s accompanying blog post):
Here’s the good word from Stephanie:
Why did you decide to join the Registry?
I joined the registry while working for the United States Senate. A drive was taking place in the lobby as we were all walking out to lunch so we signed up.
How many times have you been a bone marrow donor?
I have been a donor once. I have actually matched twice, but as the testing progressed, a closer match than me was found.
How were you informed that you were a potential match and what was the determination process like?
I was called by the National Marrow Donor Center and assigned a wonderful advocate who walked me through the entire process. After the preliminary match, I provided blood samples on a pretty regular basis. Since I was a Senate employee, I actually was put into the program for service men and women who donate. I always had my blood taken at Walter Reed by some very cute Marines.
What was the donation process like?
The most time-consuming part of the process is the blood donations that take place on a pretty regular basis. The procedure itself takes a day. I was kept overnight as it was official policy at Georgetown Medical Center, but many donors do this as an outpatient procedure. Tylenol and a bit a sleep took care of all the side effects.
*Note: There are different ways to donate – one collects bone marrow and one collects stem cells. The treating hospital will recommend which method they want, (Mayo prefers bone marrow), but the donor has the right to decline a method.
- Bone Marrow Donation: this is a surgical procedure in which liquid marrow is withdrawn from the back of the donor’s pelvic bones using special, hollow needles. Anesthesia is always used for this procedure, so donors feel no needle injections and no pain during marrow donation. Most donors feel some pain in their lower back for a few days afterwards.
- Stem Cell Donation: also called peripheral blood cell (PBSC) donation, this involves removing a donor’s blood through a sterile needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm. (Source: Be The Match, FAQs about Joining the Registry)
*Notey note: A major study is hotly anticipated within the next few years that examines which method has better outcomes. Until then, the preferred method varies among hospitals and doctors.
Is donating painful?
I wouldn’t use the word painful. It doesn’t exactly feel great, but it doesn’t hurt. You will not feel the procedure at all when it is happening. For the few days after you’ll be a bit tired. I often describe it as feeling like you went on a long jog and your muscles just need a bit of rest. You’ll also be a bit sore in your back, but that goes away very quickly. You will be incredibly well taken care of by doctors, nurses, family, friends and the donor groups. You’ll actually get sick of all the attention.
How much time did you have to take off work to donate?
I had the surgery on a Friday and could have easily been back to work on Monday. My mother came into town (the National Donor Registry paid for her flight), so I took a few extra days off to spend time with her. We actually went shopping on Monday.
What are your feelings of donating marrow post-donation?
I am very honored that I was given the chance to donate. It is an easy thing you can do to literally save a life. Not many people get opportunities like that.
Is there anything else a potential donor should know?
There is simply no reason to not join the registry and donate. There are a lot of myths out there about the procedure that I know scare some people, but they really are just myths. After my donations, most people I know joined the registry and are hopeful they’ll get picked!
I think Stephanie summed it up right nice. Although we all can’t be so lucky as to have hot-off-the-presses Marines do our blood work…
You know I’d love it if you all joined, but I must remind you that joining the Registry is a commitment, specifically you agree to:
- Be listed on the registry until your 61st birthday, unless you ask to be removed
- Consider donating to any searching patient who matches you
- Keep Be The Match updated if your address changes, you have significant health changes or you change your mind about being a donor
- Respond quickly if you are contacted as a potential match for a patient
(Source: Be The Match, FAQs about Joining the Registry)
Of course you always have the right to change your mind about donating because the program is voluntary. (New Ulm Area Catholic Schools service hours, anyone?)
Even with all the information available, there are still a lot of myths out there that keep people from joining. Look for my next post on the innovative ideas college students across the country are putting to work to remedy the problem.
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