I Donated Bone Marrow – This Is My Story

14 Jul

Good morning everyone! Today I want to veer way off-topic and share with y’all something very non-sewing – which is my recent bone marrow donation!

Before I go any farther, I do want to address the question that I have been asked the most – “Doesn’t donating bone marrow hurt really bad?” The short answer is, nope! I realize that “painful” can mean different things for different people – pain is subjective and we all have different tolerence levels! – but for me, I experienced very minor, very manageable pain (all post-procedure), no worse than the soreness you experience after exercising for the first time after a long hiatus. I believe the procedure was painful in the past, but that has not been the case for a long time. There are two ways to extract the marrow – one is surgical, one is not. You can read more about those here on Be The Match.

I initially wasn’t planning on sharing this story on my blog at all. However, the staggering amount of misinformation I’ve come across (primarily from well-meaning friends when I told them what I was up to) has led me to believe that it would be a disservice not to use my platform to share my own experience. A lot of the information you may know about donating bone marrow is out of date, or simply not true. I would, of course, encourage you to do your own research as well – but if one person signs up for the registry as a result of this post, and maybe even is found to be a potential match…. That’d be pretty fucking rad.

Anyway, moving on! I have been on the bone marrow donor registry (via Be The Match) since 2009, but wasn’t contacted until earlier this year. Lots of people who sign up for the registry and may never get the call. I honestly had forgotten about it; it’s been 12 years! I joined the registry by requesting a kit, which was mailed to me. I swabbed my cheek and mailed it back. I did not pay for anything. When they contacted me this year, it was via email with a request to call for more information. I spoke to a rep who answered all my questions (I probably asked her the pain question LOL) and once I agreed to proceed they put me on standby while they looked at other options to determine what was best for the patient.

Not gonna lie – getting the call and being told I was the “best possible option” kind of felt like I won a prize. Me! I’m the best! Hell yea!

The process leading up to the donation did not require too much of my time or effort on my end. I was assigned a rep who went over the procedure and everything with me, answered all my questions, and was my point of contact for everything related to the donation. My rep had actually donated marrow herself so she was a great resource to direct all my questions to! I went through a full physical and blood panel (including an EKG and chest x rays – side note, I had no idea my boobs would be fully visible in a chest x ray but they were and that was cool lol) to be sure it was safe for me to donate, plus a couple rounds of blood withdrawal in those last 2 weeks. The hardest part was coordinating a date for the donation – as I had a full travel+teaching schedule already booked, and my recipient is in another country so there were only certain days they were able to do the donation, plus we had to find a donation center that actually had availability for the surgery. My rep was adamant that I not change anything about my own schedule, that they would work around me, but I was just as adamant that we do the procedure as soon as we possibly could because I didn’t want my recipient to have to wait (I can’t imagine needing to wait months for a life-saving transplant???). I ended up getting booked for mid-June, between workshops, at Georgetown University Hospital in Washington DC.

All my travel arrangements (flights, hotel, etc) were booked and paid for by Be The Match. I was allowed to bring a companion – obviously I brought my mom (the ONLY person I want around when I’m not feeling well!). While there were a few things I had to pay for out of pocket (medications and supplements, and our meals during the trip), those were all reimbursed after the donation. In short, I did not pay for anything in order to donate bone marrow. Every single expense was covered by Be The Match.

The donation itself was as uneventful as you’d hope for surgery to go. I was put under anesthesia, they perforated two small holes in my lower back (right where the back dimples are), stuck a couple needles in to extract the marrow (they used the word “harvest” which honestly grosses me out so much LOL) and they were finished within 90 minutes. I was hoping for an outpatient situation – usually the case with marrow donation – but I ended up getting pretty nauseous from the anesthesia + low blood sugar (both are normal for me) so they kept me overnight. I wasn’t terribly happy about at first but honesty it was kind of awesome. The nurses were so kind and took really great care of me. I don’t want to say the whole experience was completely painless – because it wasn’t – but at most my pain was maybe 5/10. It was very very manageable with painkillers. The staff at the hospital was EXCEPTIONAL with their care and attention. They even gave me a goody bag when I left (and my emotional ass totally cried about it LOL). Unfortunately, my mom was not allowed to visit me due to COVID so she stayed in the hotel – but they set her up with a Lyft account so she could explore DC (at no expense to her) if she wished.

Overall, I was in DC for about three days. We flew in the day before, spent some time being cute tourists, I had my donation the second day, and on the third day we left and were home by about 5 PM.

One thing I was not prepared for with this donation was the recovery process. It’s not awful – but since you’ve had a lot of your marrow taken out, there are some limitations in order to allow your body to heal. For example, our flights home had me in a wheelchair to get around the airport (let me tell you, skipping all those lines was quite the silver lining woohoo) (I even got to ride in the little CAR at one airport!), and I wasn’t allowed to exercise or lift anything over 20 lbs for the first 2 weeks. I was also very, very tired. Like the sort of fatigue that you feel in your bones when you are ill. Even that honestly would have been manageable, but, I unfortunately underestimated just HOW TIRED I would be (I cannot emphasize this enough) and went straight back into traveling and teaching 2 days after donation. I managed and I lived, but it was a real struggle that I could have easily prevented by allowing myself ample time to rest. I really should have given myself at least a week to rest and recuperate before trying to go back to work.

I’m a few weeks out from my donation now, and basically back to normal – no lifting or exercise restrictions, my energy levels and appetite are completely back to their original baseline, and while I occasionally have some subtle soreness in my lower back first thing in the morning or if I stand for too long, a Tylenol knocks it out no problem. My incisions healed up without an issue, and I sort of hope they leave cute scars (just little dots on my back, super cute).

My biggest advice if you’re considering doing this – do it! Sign up for the registry now. If you are a match, you are under no obligation to donate. For real, I had SEVERAL opportunities to back out. No one would have been mad. So if you’re on the fence, understand that signing up for the registry does not automatically mean you *have* to donate if you are a match. You can say no; it is your body and ultimately your decision to make. There’s a huge chance you’ll never be called to donate – but if there is, and if you decide to do it, you will be giving a person and their family the greatest gift of all time. You get to call yourself a superhero! I think that’s pretty cool.

My other advice is to make sure you allow for ample time to rest! I really cannot stress this enough. There is no way of knowing how your body will react to the donation – some people bounce right back to normal, some have a little more of a struggle (my nurses told me stories about how some patients were running laps around the hospital within hours of surgery; meanwhile I was struggling to walk to the bathroom without throwing up!). My own struggle was directly related to the amount of rest I didn’t allow myself, and I definitely should have allowed for at least a week to recover. Go ahead and block off ample time for recovery – if you feel good, great! You can easily schedule things as you feel up to it. But also, you just donated bone marrow so it’s perfectly acceptable to spend a week sleeping on the couch in your underwear while watching Cosmos and eating peanut butter (my ideal situation).

I don’t want this to sound like it was a total walk in the park – I certainly experienced side effects that were less than pleasant, such as muscle soreness, bloating/constipation, and trouble sleeping for the first couple of nights. My entire body swelled up with all the fluid I was pumped with, and I had lil’ fat kid hands for about 2 days (see below photo LOL) and could not wear normal/non-elastic pants. Not to mention that fatigue! WOOF. But all my side effects went away within a couple of weeks, and at no point during ANY of this did I regret my decision to donate. I’ve put myself through way worse discomfort (piercings, tattoos, body waxing, IUD insertion and subsequent replacement, drunken slip’n’slides, etc) without a second thought. I’ve fractured my elbow, endured kidney stones, and once I woke up during a wisdom tooth extraction. This is NOTHING compared to any of those painful experiences. The difference with bone marrow donation is that I saved someone’s life. I gave someone a second chance.

Would I do this again? Absolutely I would, without hesitation. Losing my dad to cancer 4+ years ago was one of the hardest things I’ve ever had to experience, and I would have done anything to keep him alive. While there were unfortunately no options available for us to keep him earthbound, it is such an incredible honor to know that I can provide that hope and second chance for someone else. My body is strong, able, and healthy – I think we often forget just how able we are in comparison to others who may not be so fortunate (wheeling around the airport in a wheelchair – while admittedly fun – was a stark reminder of that in itself). Sharing my own good fortune with someone who needs it feels like the most appropriate way to truly appreciate the privilege of my good health. The recipient of my marrow is a young person in another country (please understand that due to patient privacy, I am being intentionally vague here), and I’ll probably never meet or interact with them. But I hope they know that I am rooting for them, and I hope my marrow works as magically for them as it has for me. It’s pretty good stuff!

Well this got way longer than I expected it to be! In closing, I want to share some photos that my mom took while we were in DC the day before my donation. We went down to the National Mall and walked around for the afternoon, which was so lovely. And yes, I made those pants! I used the True Bias Hudson Pants as my base, and widened the legs + raised the waistline. My fabric is a viscose/linen noil from Blackbird fabrics, so to accommodate I sized up to an 8 (I normally wear a 2 in knit Hudson pants). I also changed the pockets to be patch pockets, instead of slant. This was a quick and easy make that is great for traveling and also wearing when it’s a thousand degrees outside but you’d still like a little leg coverage!

Are you on the bone marrow registry? Have you ever donated? What was your experience like?

48 Responses to “I Donated Bone Marrow – This Is My Story”

  1. Inclement July 15, 2021 at 10:00 am #

    Thanks so much for posting this!

  2. elizabeth de sosa July 15, 2021 at 10:07 am #

    Thank you for sharing this information. It does leave me thinking about possibly becoming a donor…and I respect you even more! You are a hero and a trooper!

    • bethematch July 23, 2021 at 6:23 am #

      💙

  3. C July 15, 2021 at 10:09 am #

    This is rad! I’ve been on the registry for years and haven’t gotten The Call, so I completely understand your feeling like you won when they said you were THE ONE. I think things like this become so much more meaningful when you yourself go through some medical unpleasantness and have direct, raw understanding of what it means to be in a situation where you’re dependent upon the kindness of others, whether they’re nurses or donors.

  4. Stephanie July 15, 2021 at 10:12 am #

    This was a great read. I applaud you for your thoughtfulness and generosity! Definitely gives one pause for thought about what more we can do for others.

  5. Christine N July 15, 2021 at 10:18 am #

    Thank you for sharing your story!! I have been on the donor registry since about 2006, so it’s cool to see that after 12 years you got the call! Love your blog, photos of your house, etc etc etc. Keep ‘em coming.

  6. Deborah July 15, 2021 at 10:26 am #

    Thanks for this information and blessings on you for making this donation!

  7. CINDY S. July 15, 2021 at 10:28 am #

    You are a superhero! The gift of life is the ultimate gift. Thank you for sharing your story. I have been on the registry for 15 years and have never been called as a match. Praying your recipient has a full recovery and am thankful this morning to read this heartwarming blog.

  8. Aubrey July 15, 2021 at 10:41 am #

    I am on the registry! I figured that there might be fewer people like me (mix of ancestry/race) out there so possibly harder to find a match.

  9. Kristi Visser July 15, 2021 at 10:43 am #

    This is incredible – thank you for sharing your experience!! I’ve been on the Be the Match registry since a family friend’s 4 year old daughter was diagnosed with a rare genetic disease that will need a bone marrow match…. So heartbreaking, but we are still hopeful her match will turn up!
    I haven’t gotten the call yet, but I’ll remain on the registry as long as I can! If you can literally save someone’s life, why not right? 🙂

  10. saturdaysue July 15, 2021 at 11:02 am #

    my dear lady I haven”t read the rest of your blog but I will do so after I have sent you this. I was diagnosed with acute Leukaemia in 2015. I had six months of intense chemotherapy and had a bone marrow transplant in 2016. My donor is from Germany and that’s all I know.
    This unknown wonderful person saved my life.
    I want to thank you for your totally unselfish act. To do this for a stranger when there is nothing in it for you is amazing and uplifting. My futile attempt to put my feelings into words makes me feel inadequate. I thank you over and over.Susan Allison UK

  11. Lisa July 15, 2021 at 11:08 am #

    I did register about 20 years ago but was never called. Our workplace had a drive looking for a match for a co-worker’s child. The registry sent me a letter that I have “aged out” and now can only send money:) I was sad when that letter came! So I donate blood approx every 2 months and still feel useful. Thank you for telling us about your experience–lucky you!

  12. Angie July 15, 2021 at 11:12 am #

    I have been meaning to register with Be the Match for over a year. This post finally made me take the time to actually do it! I’m now waiting on my swab kit to be shipped. Thanks so much for sharing all of these details!

    • Sarah W July 16, 2021 at 7:35 am #

      You are such a good egg!

  13. Tina C. July 15, 2021 at 11:17 am #

    Wah. I’m too old to go on a donor list. I’ll figure out another way to help.

  14. Heidi July 15, 2021 at 11:37 am #

    My dear friend just received a bone marrow transplant a few months ago and she’s doing well. She had previously received the kind where they take your own marrow and do something to it and give it back to you and it didn’t work. None of it involved surgery, though; it was all done intravenously on her side, but I don’t know about the donor side of things. Her donor is in Europe. I think they give the option knowing who they are after a year, with consent. She breaks down in tears every time she talks about her donor. She is so grateful. I’ve been meaning to look into being a donor myself, so thanks!

  15. Megan Francine July 15, 2021 at 11:43 am #

    This was such a motivational and inspiring story! Thank you for sharing! I’m a nurse but I don’t work in this area of medicine so I learned a lot about the process. I think it’s wonderful you did something like this to help someone you don’t know!! After reading I got on the website to register!

  16. Heather Myers July 15, 2021 at 11:48 am #

    You just entered hero status for both sewist and donor. Thanks for sharing this, and your enthusiasm for… Well, for being alive and creative! 😊

  17. Sue Silver July 15, 2021 at 12:51 pm #

    That is fabulous. Thank you.

  18. thegabrielratchet July 15, 2021 at 1:40 pm #

    made me cry. can’t donate myself, so grateful for people like you who can and do.

    and yeah “harvest” is bad form.

  19. Tracy July 15, 2021 at 1:59 pm #

    You Rock! Thanks for being an inspiring human being and yeah, using salty language!

  20. Shelley Kearney July 15, 2021 at 2:18 pm #

    You have a generous soul and I will be perusing this and registering. Thank you

  21. Pam Kocke July 15, 2021 at 3:14 pm #

    I’ve been on the registry for years, but turns out now I’m too old. (46) Yeesh.

  22. Sally King July 15, 2021 at 3:25 pm #

    This was a fucking inspirational story. I cried and you are amazing for sharing.

  23. Carmen July 15, 2021 at 4:00 pm #

    Thank you for sharing your story!
    As someone who has 2 types of blood cancers and underwent a stem cell transplant from my own cells in November, I say Thank You, you have saved a life❤️
    Thank you to all the bone marrow donors and blood donors❤️

  24. Nicole B July 15, 2021 at 4:04 pm #

    As if you weren’t already a rock star, you are an even bigger one now. My uncle had leukemia years ago and needed a BMT. I joined the registry shortly after and haven’t been called. Thank you for sharing all the details, it helps to read a first hand account. Rock on!

  25. Tanya July 15, 2021 at 4:28 pm #

    Many years ago, in the the UK, I was on the Anthony Nolan bone marrow donor list, then after many years I was called to donate as I was a potential match for someone, but by then I had developed IBD and was not allowed to donate, as there is a danger of passing it onto the recipient. I cried heavily that day.

  26. Moving Oakland July 15, 2021 at 8:47 pm #

    Lauren, this post is EXCELLENT in its detail and honesty. Donation is so important. I lost a childhood friend waiting for a transplant 4 years ago (she had 6 children!). What you have outlined in this post is SUCH A SERVICE. Yeah YOU! Thank you. And a second “atta girl” for closing the post with sewing deets. The best!

  27. gkathryn55 July 15, 2021 at 9:06 pm #

    Thank you for sharing your story. I’ve been on the registry for a while but this is a good reminder to make sure that they have updated contact information for me.

  28. Pam July 15, 2021 at 9:44 pm #

    Oh I’m so thrilled you did and gave the good information about it is no longer painful (as it was in the past); I don’t think now I can donate (I have melanoma (but NED)) but will definitely look into it.

  29. Lodi July 15, 2021 at 11:41 pm #

    Wow. Your story and those that followed in the comments. Thank you!

  30. Michele July 15, 2021 at 11:57 pm #

    How wonderful, for both you and the recipient, and for those of us that you have shared this with! Presently there is so much that is terribly wrong in the world … you have restored my faith in humanity.

  31. Juli July 16, 2021 at 1:41 am #

    So beautifully said, you are a complete superhero as are all blood and bone marrow donors. How generous you are! How amazing and wonderful is the gift of life, nothing greater. Thank you for raising awareness and mythbusting the donation process, such encouragement for others. I was diagnosed with acute myeloid leukemia in 2004 and received a stem cell transplant later that year, my one and only sibling was a match. My children were 12 months and 5 years old at the time, they are now 18 and 24, in my mind that says it all, I am thankful!

  32. Betty Finn July 16, 2021 at 7:49 am #

    Amazing! Thank you for sharing this!

  33. Anonymous July 16, 2021 at 10:51 am #

    Thanks so much for all this info! Loved hearing this from a real person (and a sewist at that!). I have been on the registry for years as well. So it’s nice to know what to expect if the call comes in

  34. Wendy July 16, 2021 at 1:28 pm #

    Someone like you from another country saved my mother’s life 15 years ago by donating bone marrow. Thank you for your donation and for encouraging others!

  35. Roslyn Brettle July 16, 2021 at 3:15 pm #

    I donated bone marrow to my Brother in 1997 and also gave him “white cells” donation in 1999 when the Leukemia returned as Tumors . I was the perfect match for him and wondered whether it was because we had Birthdays the same day and time but not the years. I was 4 years older. My treatment consisted of Injections to stimulate the “bone marrow” on both occasions . Felt like I had been kicked by a “mule” . I had a bit of a headache but took “Panadol” and all was good. After the extraction on both counts all was good and I felt great, not sore just had a reaction to the tape they used to cover the pad on the extraction site. Sadly we lost him in 2000, but I was happy I was able to give him the extra years to spend with his dear family . Birthday time for me is sad as I miss him dreadfully
    Yes I would do it again, but NO I was too old apparantly at the time .

  36. Jane the Raincity Librarian July 16, 2021 at 4:03 pm #

    Thank you, thank you, thank you! We lost my dad to cancer too. He was scheduled for a bone marrow transplant but unfortunately passed away before he could go through it. But it moved me so much to know that there was a donor out there who was willing to share their literal body with a stranger, to help us keep our family together. Donors are absolute heroes, saving lives. ♥️

  37. Gertrude July 16, 2021 at 7:49 pm #

    What a beautiful courageous thing to do. Thank you. I was on the registry bit never came up for a match. Now I am off due to age. 😥

  38. Denise July 17, 2021 at 2:15 am #

    Thank you for demystifying and debunking the urban myths around the bone marrow donation process. Your story is so inspiring and has prompted me to look into being a donor.

  39. Paula Jean July 17, 2021 at 11:42 am #

    What an amazing thing! Thank you for sharing your whole process. This post is such a great resource. I have a chronic condition that makes me ineligible, but I will refer anyone I know who is contemplating getting on the registry to your story. Sending healthy, healing vibes to you and your donation recipient!!

  40. Connie German July 17, 2021 at 7:15 pm #

    Very interesting, Yes, I have been on the registry list a long time and never called.
    But the next time I am in the airport and someone is riding in a wheelchair, I am going to assume they just had their marrow harvested. Thanks for sharing your story.

  41. jqrd July 17, 2021 at 7:29 pm #

    You can add super hero to your resume along with all your other accomplishments 👏🏼
    Thanks for sharing this post, it’s so impossible 🥰

  42. C July 19, 2021 at 12:34 pm #

    THANK YOU for sharing your experience, from losing your dad to finding ways to give back to others to inspiring all of us with your sewing genius — we are HERE FOR IT! I’m a universal blood donor, and had thought about signing up for Be the Match, and you just took away much of my fears! You are a true hero, Lauren!!

  43. A July 19, 2021 at 2:01 pm #

    Wow! Thanks for doing this and for writing about it. I read every word. I can attest to the fact that there is no judgment from the organization if you decline. (Assuming I dealt with the same org.) They are complete professionals. I signed up at a college drive in the ’90s (with actual blood! I guess the technology/science have come a long way since then) and got the call in the early 2000s. I had since developed a poorly understood chronic condition involving my immune system and was worried this would not be good for anyone who needed bone marrow. I see now that it may have been fine, but my condition didn’t even have a name then, or at least I didn’t know it. (And it’s still poorly understood.) I felt guilty about it then and now (when I am reminded of it), which is…complex, but I made what I thought was the right decision at the time for the patient and for me. I was just wondering if they’d even be able to find me now (I have moved so much since then), but I see I will age out soon.

  44. Hashi July 19, 2021 at 10:43 pm #

    I’ve been on the registry for decades but I’ve aged out now. I would have been thrilled to donate. Good for you!

  45. Jackie July 20, 2021 at 8:11 am #

    Bravo to you brave girl! You are amazing and so is your story!

  46. susanrotter July 22, 2021 at 6:10 am #

    Well done you and thanks for the details on the process. I’ve been on the registry for years and years too. I was contacted a couple years ago but because I’ve moved permanently to the U.K. it was too complicated for them to use me. I would have been happy to travel to the USA to do it but …Happily there was another possible match so I think the recipient still received what s/he needed. I’m now on the U.K. registry.

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