Tuesday, February 26, 2013

16 Years on a Waiting List


I received an email today that February 27th is my 16-year anniversary for a rather odd waiting list. On February 27, 1997 I volunteered to be a Bone Marrow Donor.

I was matched once with a patient a few years ago who needed a bone marrow transplant. That was a rather surreal email to receive. I was a match for a stranger who had a life-threatening illness. I’ve donated blood for years, a stick in the arm and after they give you cookies and juice. Donating bone marrow is a bit more involved.

I wasn’t told who the patient was, how old or what illness he or she had. Or even where this person lived. The National Marrow Donor Program said if I was willing to donate, to call their number. I called.

If you sign up to be a bone marrow donor, usually done while giving a routine blood donation, they’ll take extra samples for special testing. Then they keep your information on file and contact you if a match if found.

If they find a match, the National Marrow Donor Program (NMDP) will contact you to see if you’re still interested, and also to see if you’re in good health. Then they’ll coordinated the next steps with a locale blood center or hospital. When they contacted me and I agreed to the donation, they had me call a blood center in town. The NMDP sent my files to them and I was scheduled for further testing. After asking me a bunch of questions, mostly health related and if I could get off work for a couple days, they told me to wait until I was contacted. My employer was very supportive and said I could have off all the days I needed for the donation and recovery. In anticipation of the call, I contacted my doctor because I would need a physical exam.

There are two methods of donation: Peripheral blood stem cells (PBSC) and bone marrow. The patient’s doctor decides the method that is best. I was told it would be bone marrow.

PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then 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 you through the other arm. Your blood-forming cells are back to their normal levels within 4 to 6 weeks. PBSC donors can expect to experience a headache, or bone or muscle aches for several days before collection, a side effect of the filgrastim injections. These effects disappear shortly after collection. Most PBSC donors report that they feel completely recovered within 2 weeks of donation.

Marrow donation is a surgical outpatient procedure that takes place at a hospital. You will receive anesthesia and feel no pain during the donation. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone. The marrow replaces itself completely within 4 to 6 weeks. Marrow donors can expect to feel some soreness in their lower back for a few days or longer following the donation. Most marrow donors report that they feel completely recovered within 3 weeks of donation.


Robin Roberts from Good Morning America is a successful recipient of a bone marrow transplant.http://abcnews.go.com/Health/robin-roberts-journey-inside-courageous-fight-mds/story?id=18562093

My story: The procedure was cancelled. Sadly, I never found out why. I was a little nervous but had myself psyched, so it was a letdown. Whether the patient decided on another mode of treatment, or they decided the bone marrow transplant would be too risky, I don’t know. I always wondered what happened to that patient.

And I’m still on the waiting list…
Interested in learning more? http://marrow.org/Home.aspx


S. J. Maylee said...

So cool, Kathy. You're awesomesauce. I bet your writer mind goes wild over what happened with that patient. Thank you for sharing your experience.

Melissa Keir said...

I signed up last year when a local little boy needed a match. They held many sign ups hoping to find a perfect match for him so that he would have a chance at life. Sadly I wasn't a match and I wait to see if I will receive the call. It's like being a super hero. You never know when you'll be called or what it will take of you, but for a chance to improve someone's life... you'll do it.

Kathy Kulig said...

Thanks SJ, Yes, I do wonder what happened to that patient. I hope he/she recovered. Or got a different donor.

Melissa. Cool for you! I hope that little boy did okay. Yes, it's a good feeling to be able to help if you can. Yes, I guess a super hero is true. Making a sacrifice for a stranger. I know someone who did donate and said they were very glad they did it.

Lolita Lopez said...

That's really wonderful that you were willing to give!

I signed up to be a bone marrow donor in 2008 during a 5K race sponsored by a frat trying to raise awareness for a sick member. I haven't been called yet but I'm always willing to give.

After our daughter received so many blood products during her heart surgeries, I'm incredibly sensitive to the realities of medical donations. I think it's great that you posted your story! It gets folks talking--and that's always a good thing!