Archive for August, 2014

Real Life Heroines: A Be the Match Donation Registry Experience

Thursday, August 21st, 2014

A couple of years ago, I had the pleasure of meeting American resident Tracy Hansen during a cruise of the Galapagos. We quickly hit it off and have remained friends. Recently, Tracy did something she probably doesn’t consider heroic at all, because what true-life hero considers themselves heroic? No, they’re just doing something that in their minds needs to be done. Tracy donated her marrow to a fellow human being suffering from leukemia. I don’t know about you, but I consider that pretty darn heroic! One of my aunts has a rare blood disorder that mimics leukemia in some ways, but is not cancer (I don’t even know the name of the disease, just that she has it and has survived all the members of her original support group, including the doctor who started the support group). This aunt, now in her early seventies, has required several blood transfusions over a span of decades, and she definitely relies on heroes and heroines like Tracy willing to donate their blood, or marrow, or whatever necessary.

Tracy posted her story on Facebook and gave me permission to reprint her experience on my blog. If you are inspired by Tracy’s story, please consider registering for the U.S. National Donor Program’s Be the Match Registry. Canada has a similar registry called OneMatch Stem Cell and Marrow Network

Tracy’s Story:

TracyHansenDonationA little over a month ago, I donated marrow to an adult female with leukemia. I thought that I would share my experience in hopes of someone else signing up to be a donor and, hopefully someday, having the opportunity to potentially save a life of someone in need of a transplant.

My journey started almost 19 years ago when I signed up for the National Donor Program’s ‘Be the Match Registry’. It was so long ago that I can’t remember for sure, but I think that they just took some extra blood during one of my regular blood donations to send off to the Registry. Now, all they do is take a cheek swab.

Fast forward to early 2014… I received an e-mail from the Be the Match Registry notifying me that I was a potential match for a specific patient. It had been so long that I had forgotten that I even signed up. I called the Registry and told them that I was still willing to donate. I went through a fairly comprehensive set of questions over the phone that day, where they tried to determine if there were any obvious reasons that I would not be eligible to donate – the same set of questions I would have to answer several more times throughout the process. There were possibly other potential donors going through the same process for the same patient.

A few weeks later, I got another call from the Registry asking permission to do further testing on my sample that they had from 19 years ago, which I (of course) agreed to. This step was to get a better idea if I was a close match. Two months later I received another call that my 19 year old sample showed that I was a close match. The next step involved additional blood testing. I went to a lab close to my home where they took around 15 vials of blood. That may sound like a lot but it was one poke in the arm and I was in and out in less than 10 minutes. These vials were sent off to test my current blood for all sorts of things, including determining if I was the best match for the patient. Then, more waiting…

A month later, I got THE call. I was the best match for this woman. I needed to go through final testing (more blood testing, an EKG, chest x-rays and a physical) but, barring any issues found during that final test, they asked me if I was willing to donate about a month later. I would be donating peripheral blood stem cells (PBSC), which is a much easier process than a bone marrow donation. Most donations today are PBSC rather than bone marrow.

I received an injection of a special drug each day for the 4 days leading up to my donation day. This drug helps release stem cells from my bone marrow into my blood stream so that that they can collect them through apheresis. On the first injection day, they drew a couple of vials of blood to get my starting counts. The injections themselves were basically painless but starting day 3, my bones got a little achy. Nothing horrible, I just had to stand up or sit down slowly. That achiness went away as soon as I stopped getting the injections.

On donation day, they took 2 more vials of blood to get my ending counts so that they could make sure that I had enough stem cells floating around in my blood for a successful donation. They normally do a final injection on donation day but I had so many stem cells in my blood that I didn’t need the last injection. For the donation itself, they inserted a needle in the crook of my left arm where they would draw the blood out. They inserted another needle in my right wrist where they would return my blood after it went through the apheresis machine and removed my PBSCs. I had to sit/lie in a hospital bed for about 6 hours. I couldn’t move my left arm but I was free to move might right arm. It was a little hard to lay there for 6 hours but I had a book and I could watch movies if I had wanted. All in all, it was a relatively painless process.

So here is what I had to ‘give’ during my donation process:

– My initial sample, which is done as a cheek swab now
– About 2 hours of my time for various phone calls with the Registry throughout the entire process over 4 months
– Lots of waiting
– About 30 vials of blood (in total) for 2 sets of testing and 2 rounds of blood counts for the donation process.
– About 7 hours of my time for other testing to make sure that I was healthy enough to donate
– About 90 minutes of my time for injections over the course of 4 days leading up to donation day
– About 8 hours of my time on donation day
– And, most importantly, one bag of peripheral blood stem cells

I don’t know anything about the person that I donated to other than she needed a donation and did not have a match within her family. I do not (yet) know how well the patient is doing after receiving my donation. I should receive an update at 6 months and one year after donation. I may potentially find out who she is after one year, if she and I are both willing and if the country that she lives in allows that information to be shared. Either way, I hope she is well on her way to recovery.

I hope that by sharing my experience, at least one of you will consider signing up with Be the Match Registry (www.BeTheMatch.org) in hopes of making a donation in the future to potentially save someone’s life.

Be the Match (U.S.)

OneMatch (Canada)

Go forth and register! (This last from Cindy, whose writer’s mind is bubbling with possible story scenarios, but that’s another post).