Thoughts Five Years After Donating Marrow Stem Cells

Four years ago I wrote a post on my thoughts one year after donating bone marrow stem cells. For medical information about the procedure and my experience with it, I refer you to that post. At the time of the post, I had not yet met my recipient. I knew that he was still alive but that his health wasn’t yet in a state where they’d introduce us. I signed a form, I don’t remember know if it was right after or a full year after, letting them know I’d be willing to have my info given to the recipient and receive theirs.

About 18 months after donation, one random day I answered an unknown number to hear a shaky older Southern man on the line. Through tears, he introduced himself and told me that he was my recipient and that I’d saved his life. I sat down and cried too. It was about a year after I’d lost my mother, my brain was in a difficult place, but I was so happy that this stranger was still alive.

We exchanged email and phone numbers (I got his info in the mail shortly after, from the Marrow Foundation) and then he told me that he was well enough to travel and he and his wife wanted to come up to DC to meet me. They had some friends in the area, too, ones they hadn’t seen for a while because of his illness. We worked it out over email and then he and his wife met me at a metro station and took us out to dinner.

It was a bit surreal. Here was this man, this person I knew absolutely nothing about, and yet my stem cells had produced every bit of blood that flowed through his veins. I can’t describe that kind of relationship.

He was still frail, still recovering. The post-transplant experience had been rough on him. He was in his late 60s, his cancer had been serious enough to warrant the nuke-his-marrow-and-transplant method which recipients get, and transplants are rough on the body. But, with tears in his eyes, he told me about his grandkids. He brought copies of their photos for me, and of his two adult children as well. He would be alive to see the grandkids grow up now.

Years Following

We friended each other on Facebook and have kept in touch periodically ever since. They send birthday and Christmas cards. We like each other’s Facebook statuses. I see his grandkids getting older, see pictures of him taking his granddaughter to a school event or of their Christmases and birthdays.

It is still strange, this relationship between us. I know from talking to him that I will never be able to understand the depth to which my transfusion mattered to him. His wife told me how, while I was undergoing ER treatment for side-effects of a painkiller I’d taken during donation prep (see my other post, it was a personal problem, not one necessarily related to the transplant), she was getting news that he wouldn’t live long enough to receive my donation a few days later.

Sometimes, though, I look at my body and marvel that it could have produced things not just to keep me alive but to save the life of another human as well. On my worst mental health days, I sometimes recall the family to mind and remind myself how his grandchildren—pre-schoolers and lower-graders when he was first dying, are now old enough to really know their grandfather as a person.

We passed the 5-year mark in November, and just a few days ago he posted an update on Facebook that he had been pronounced 5-years cancer-free. It has not been an easy 5 years for either of us, I think. But I am so very glad that all those years ago in college I visited a marrow donation drive, got my blood taken (I think it’s just a cheek swab now), and filled out the paperwork for the marrow registry

Joining the Marrow Registry

If you have any questions, please feel free to comment below or contact me and I’ll do my best to answer.

The process for joining the marrow registry has been an ever-changing one since I signed up. If you are between 18 and 44, joining is free. You can join at an event or have a swab kit sent to you. When you "check out" after completing the health screening and other basic info, they’ll ask for a donation to cover labs & processing.

Aside: Adding a new member costs about $100. As I noted in my previous post on the subject, the Marrow Foundation covered everything related to the donation, including my surprise ER trip. Some of that was through the recipient’s insurance and some was the Marrow Foundation paying for my parking, my food the day of, etc. They’d have flown me and a companion in and put us up if I didn’t live within easy driving distance of the hospital. However if you cannot donate $ and are between 18 and 44, joining is a million times better than not joining, so don’t let that scare you. There is, at time of writing, no charge to join. I believe they briefly did.

If you’re 45 to 60, you can still join but they do require the $100 donation. Your marrow/marrow stem cells may still be used. But because of the decreased likelihood of your being the best choice, they charge. You can read more about that and other FAQs on their site

If you’re over 60, well, the risk of your stem cells working well and the risks to you are so greatly increased that their age restrictions keep you out. You can still donate money or, if you don’t have money, look for ways to help in sign-up drives, fundraisers, etc. for the organization.

There is some of the same BS that keeps gay men from donating blood, although you can donate if you’ve been celibate 5 years…which is asking a LOT but may also be true for some gay dudes with less-than-ideal love lives or bi dudes who’ve been w/a woman 5+ years which is why I’m including the specifics (as of today).

5 Comments

  1. HF says:

    Hi, thank you for your candid story of donating stem cells. I was just contacted by Be the Match that I was a donor candidate for PBSC. I am very nervous about the procedure due to the side effects – more particularly, the long term side effects. I know there is risk in everything, but I was wondering if you had any long term adverse effects from the treatment? Thanks in advance!

    • Mike says:

      I would be interested too, especially how you felt after donation process. Did you experienced any changes in your body, like pain, bruises or maybe increased sensitivity in your fingers? Thank you!

      • Ruth says:

        Nope. They actually studied me 5 years out to see if I had any weird side effects, but I stayed utterly normal. Directly after, I was utterly exhausted for about a week, but got better very fast after that.

  2. Scott says:

    I wonder if it would be possible to donate and store your own bone marrow to be used later as a rejuvenator. I mentioned this to a hematologist and he said why not, if you want to pay for it. But, guineapigs don’the pay to be in the lab. There is some scientific evidence that this might work. http://www.sciencemag.org/news/2014/05/young-blood-renews-old-mice

  3. Sue F says:

    Thanks for both your blogs. I received a letter last week stating I am a potential match. and I have agreed for the next stage to go ahead – I think I have to give more blood? So hoping I am a full match :)

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