Thoughts One Year After Donating Bone Marrow Stem Cells

Last November 16th, I donated hematopoetic stem cells (the stem cells that form bone marrow–adult stem cells) to a man with MDS whose best chance of surviving was a stem cell transplant. I can’t believe it’s been a whole year now. Last I heard from the program, he was still alive. Now that it’s been a year, I have a chance of learning his name, maybe even meeting him!

Back in college, the National Marrow Donor Program did a drive on campus. I have to admit, I was not in a healthy frame of mind when I signed up. I’d found out that my mother was going to die. I was depressed. I wasn’t still suicidal at that point, but I was extremely sad. Bone marrow transplants weren’t what could save her, but I signed up thinking that death was so horrible and maybe I could save someone. It’s actually not a bad way of looking at it—we can’t always save the ones we love, but sometimes we can help other people. (It’s even easier to sign up now…they just need a cheek swab and can even send you a kit in the mail.)

I didn’t think about it much, kept the card in my jewelry box and eventually forgot entirely about it. Fast-forward to Summer of 2009. Out of the blue, I get a phone call saying that I might be the match for someone. Am I still interested? Will I give more blood to confirm? Do I have questions? Can I fill out a bunch of forms?

I took a few days to think about it, read about it online to make sure I knew what everything entailed and decided to go ahead.

After months of back-and-forth and some blood tests to confirm that I was a really truly perfect match (they said something about 20 points of comparison), we scheduled the donation.

The Donation Prep

Donating bone marrow stem cells (PBSC) is a bit different from donating regular bone marrow. Instead of pulling marrow out of a bone, they take the stem cells that create marrow right out of your blood. It gets run through an apheresis machine and the stem cells are collected while the rest gets put back in.

In order to donate, you need far far more bone marrow stem cells in your blood than the average person has. Before donating, you need a series of injections of a drug called Filgrastim (brand name Neupogen) which kicks your body into overdrive producing the stem cells. They don’t inject it straight into the blood but put it in where it’ll trickle in slowly over the day. Unfortunately, your body’s not meant to be producing this many stem cells and other things and therefore it’s quite painful in areas with a lot of bone. I had a lot of pain in my arms, legs, and shoulder blades. It wasn’t more than I could bear without meds, but it was too much for me to be able to go to work the day after the first shot.

I got injections over the 4 days before the day of donation. Because I live in DC and Georgetown University Hospital is part of the donor program, I was able to do it all here. For people who don’t live near a donation hospital, arrangements vary. The NMDP will fund travel, food, and lodging if you need to fly/drive elsewhere, not just for you but also for a companion (which is really important, I couldn’t have done this without ProfX).

The hardest part of the preparation was almost entirely unconnected with the donation process. As I mentioned, the Filgrastim/Neupogen causes a lot of bone pain. My plan for Friday – Sunday was pretty much to take painkillers regularly and zone out on the couch. Come Friday, I was already hurting by mid-mornings so I took the day off work after my shot & went home to pop my first painkiller.

Only it turns out I’m violently allergic to Tramadol, the painkiller they gave me. Had we known, I’d have been given something else. I actually ended up in an ER because I was so sick, constantly vomiting, and got dehydrated and started passing out (I’d initially thought maybe I could wait it out). The ER folks had a briefing from my supervising doctor & took great care of me. It’s the only time I’ve been through triage in less than 15 min, and had there not been a stabbing victim ahead of me, it’d have been faster. I spent Friday night-early Saturday morning in the ER, then had a checkup with the donation doctor/nurse to see if I was still well enough to donate.

The worst part was before I got to the ER. Being in the ER wasn’t fun, but I felt so much better once I got an anti-nausea med and a liter of saline that I was happy to just lie there.

The checkup on Saturday went well. They gave me a smaller dose of the Filgrastim because they weren’t letting me take any painkillers until Sunday, but I checked out ok and I felt like I was still up for it. On Sunday I took oxy-codone, which I’d had before and was exactly what I needed for the pain.

The Day I Donated

I donated on Monday the 16th. Got up very early and headed out to the hospital. They had to do one last blood test to see if I had enough stem cells, make sure nothing was wrong, and then I could donate. The test came back fine, so I got a quick IV test. I really don’t like IVs or needles, they make me a bit queasy, but by this point I was desensitized to it. I’d been stabbed a lot that week.

Unfortunately, like many women, I just didn’t have the veins for the IV-in, IV-out system. So we went with a central line instead. I was not wild about it but also not going to back out at this point. The doctor convinced me that the neck really is better than the leg (she had very good points, I just felt squicky about my neck) and I got wheeled off to get the line put in.

Then back to the donation room. I got hooked up to the apheresis machine and soon got going. The donation itself was quite smooth. The only hitch I remember was a short period where I was losing too much calcium (a known possible side-effect they’d told me how to look out for), but they had a bag of it on hand and took care of it quickly. Because of the myriad of drugs in my system and the weekend I’d had, I just slept through most of it.

Near the end, I hallucinated faeries dancing around my nether regions and telling me that I couldn’t use the bedpan. So I just waited until it was all over to visit the bathroom. Gotta obey the faeries. That was weird, but not bad-weird.

After the donation was over, the courier showed up and they showed me the collection before sending it off with him. It was awesome to think “Wow, my body made that and it’s going to go help someone now!”

I felt well enough to celebrate with pizza that night (which the NMDP covered, since there was no way ProfX or I could’ve cooked anything). I’d saved up enough time to take the week off, so I rested up, went to an Amanda Palmer show Thursday (not my brightest idea, perhaps, but very worth it), aced the GRE Friday, and was back at work the next Monday. It was one of the craziest weeks of my life.

If You’re Going to Donate

It’s hard to say no when you’re aware that you may very well be the only chance this person has at surviving. But donating is a big commitment and it definitely involves some risk. A year later, my experience feels like a good one. At the time, I was mostly exhausted but felt successful.

The doctor/nurse/aid trio at Georgetown made me feel like I was in good hands. They answered my questions, they checked me out rather extensively after my ER visit, they talked with me about my frame of mind, and they told me periodically that I could back out or I could reschedule if I didn’t feel I was able to do it right now. I felt like I was their patient, which is how it should be.

I also had a very good experience with my NMDP liaison, who walked me through the 4-5 months before the donation and followed-up with me several times afterward.

The big problem for me was a previously-unknown allergy to a painkiller, which I don’t really see as part of the donation process. But if you’re donating PBSC I suggest talking with your doctor about the painkillers. If you’ve taken a heavy-strength one before (I took oxy-codone after a surgery when I was 16), then let them know that it worked for you.

One Year Later

This last year has actually been kind of hellish. I’ve often felt completely impotent, buffeted by fates and chance and other people. I’m grateful that I can look back and pinpoint somewhere that I was able to make a difference for another person, a lasting difference. I hope that he gets entirely better, but even if I was just able to give him another year or two, I know first-hand what that means to a family.

56 Comments

  1. Ruth says:

    Fantastic to hear your news, Janell. I imagine your arms got quite the workout!

  2. Courtney says:

    Thank you so much for writing this. Trying to be vague to protect the system of anonymous donation process but someone very close to me is donating on Friday. I appreciate your candid details. We only know the age and sex of the person and that she is not in the US. We were a donor within 6 weeks of joining the registry, just 2 months after starting a project to encourage people to pay if forward (www.steps-together.com). Crazy how some wait for so long and for some it’s so immediate. Prays for our donor and our unknown recipient.

  3. Leslie Russell Yost says:

    Thank you for your post!!
    I got the call this morning that I’m a match. Got the call several weeks ago that I was in the running. I’m nervous and excited. A lil worried about pain, but, bruising & such isn’t such a big deal compared to cancer or leukemia. My guy is in Nashville area, so very convenient for me. And. He’s my age.
    Don’t know if it’ll be blood or bone, will know soon enough.
    My family, down to our dogs, gets cancer. All forms. So, seems a good thing to do to build kharma. And, it’s just blood and marrow. I’ll make more! Right?

  4. Ingrid says:

    Thanks for this post. I was called yesterday and informed that I was a match. I have yet to do the blood testing that will confirm if I am the right match. I have just found out that there are no participating hospitals in my state. Traveling to another state wouldn’t be an issue for one procedure, but do the daily injections of filgrastim also need to be administered in a participating hospital? Thanks again for sharing your story.

  5. Stephen says:

    Ruth, I needed to hear your story. My wife will be receiving her brother’s stem cells in a BMT in a couple of weeks. Sharing your experience like this has helped so much in our preparation. Thank you!

  6. Rachelm says:

    I registered in college 12 years ago and got the call today. I was a bit shell shocked and went through the health questions and updated contact info in a bit of a daze. 13 year old boy …. How do you say no to that? The first step felt like a temperature test on my willingness to donate. After a little Internet reading I see why they ask your willingness. Most people back out when their opportunity arrives to donate. I am in the waiting period to hear if I am a usable match or not….. If nothing else it makes you explore yourself and your willingness to give part of yourself to a complete stranger, just for the good of another anonymous being sharing the planet.

  7. AMB says:

    I am a 44 year old female from the UK and am due to be a donor in one months time. My mother got a call in June from the Anthony Nolan Trust while I was on holiday (I had moved home and not notified them). I had been on the register for 6 years and after some more tests I was told that I was a perfect match for an adult female but that’s all the info I was given. I was quite emotional when I found out I was a definite match. I am so looking forward to doing this and believe it is the best thing I have ever done. I cannot imagine what the patient and their family are going through and can only think that if I were my family I would be desperate for a life saving transplant. For me it is only a small inconvenience yet I know this means the world to others. I pray that my recipient recovers well and one day I may get the chance to contact them.

  8. Erin says:

    Hi Ruth- I am a potential match and have my first blood test on Wed. I am nervous since I have a small daughter to care for, but I am doing it because it is the right thing to do. Your story was so helpful to me. Thanks!

  9. AMB says:

    My donation took place on the 3rd and 4th of October. My Filgrastim injections caused no side effects whatsoever, I was very busy at work and decorating my home and managed to do this no problem. I would say I received the first lot in my arm but preferred to do them in the stomach after as the arm was a bit painful. Although I had good veins the suction of the machine led to the veins just collapsing and after many moves of the canula they decided I would have to have a central line put in my neck. I did feel apprehensive but it was ok. A bit uncomfortable and strange feeling getting it done but not painful. They did the collection on Thurs and Fri as they didn’t get enough cells on Fri. As I has the line in, I had to stay overnight in hospital. My neck was a bit painful just because if the line. During the second donation they put in some calcium through the line as I has slight pins and needles. Getting the tube out was slightly uncomfortable but not painful. I flew home on Friday night and have been absolutely fine. Not tired and can do everything I normally do. Neck is a bit tender and some bruising in arms with all the canula moves to different veins but that’s all. I’ve not had to take any painkillers at all throughout. Would definitely do it all again. Hospital staff were great.

  10. jon says:

    Thank you for sharing your story and for everyone’s comments. You are all so brave. I also have the potential to be a match and just had the call. I am excited to help but am cautious as I am the sole provider for our family and have have 2 young children. For those that donated, did you have much concern over the long term affects of the filgrastin?

  11. Jen says:

    Thanks for sharing this. I got my first neupogen injections today, and am scheduled to donate on Tuesday. I was only on the registry for about five months before I got the initial call. I’m really hoping this procedure will help the recipient, and can’t wait for the initial update. It’s good to get the details from someone who’s been through it it.

  12. AMB says:

    Jon no I did not have any concerns about the long term effects of the Filgrastin. I checked out the research and was happy with the findings of that. I am a single parent and rely on myself financially. There are lots of drugs out there being used that are new and no one really knows the long term effects of them. This is a tiny amount of a naturally produced hormone that the donor receives over 4 days only. I think you have got to keep it in perspective. I don’t have any worries about receiving this for 4 days of my life, it would be different if it was for a long period of time. However, you are always going to get studies that warn of the dangers.

  13. Derek says:

    I just recently went through the same process. Got the injections for 5 days before the actual donation. I was told the symptoms can be different for other people. It felt like I was very sore in my joints( especially at the base of my skull where my neck meets and the base of my back) and I had a fever. But honestly it wasnt an excruciating pain that put me down. I made a promise to myself also that I would follow this through. I figured Im healthy, so why not give someone else what I really dont need? If that makes sense, haha. I wont find out if the recipient is doing any better until 3 months after the donation, and I wont get to find out who it was until after a year. But that was fine with me. I feel like I actually did something to help someone.

  14. AMB says:

    Two weeks ago I received a letter from my recipient. It had been 2 months since she received my stem cells and she was doing well. Reading her letter was very emotional. Although you know you are doing good, it’s not until you actually receive some correspondence from your recipient that you realise just what it means to them and their family. Best thing I have ever done and I can’t wait to meet her when the time comes.

  15. lori says:

    This is something I’ve always wanted to do and now that I am getting older-50….I decided now or never. My kids are grown. I am a teacher and have had several students with leukemia as well as a close family friend who died of it. My pain threshold is high and I am not terribly bothered by needles. Yet…..I am terrified. But I think I will do it. I can’t imagine being a parent of a child waiting for a match. I want to increase the chances of someone finding their miracle….so terrified I will proceed….

  16. AMB says:

    You may find your too old unfortunately. In the UK there is an upper age limit of 30.

  17. Stephie says:

    Hi, I’m going to likely be going through the same thing soon, and am mainly worried about the central line. I’m a short gal, so I have to assume my veins are gonna be too small, so can you tell me more on what that entailed? I’m already sure about doing it, I just kinda wanna know how bad a needle in the neck will be… thanks!!

    • Ruth says:

      They sedate you a little before putting in the neck central line (I was conscious for it). They gave me a local anesthetic first, as well. Basically, I didn’t feel anything until later that night, but then I had painkillers. I guess it was a little sore for a couple days, but I was nervous about it beforehand and surprised how ok it was.

  18. Stephie says:

    Awesome, thank you!!!

  19. Jon says:

    Lori-that is great you want to help. Kudos! Even if you happen to be over the age limit-there is important work to do. There aren’t close to enough donors registered. There are lots of ways to help get the word out and encourage others to register and that is equally important.

  20. AMB says:

    Stephie, your height is not linked to your veins in any way so I wouldn’t worry about that too much. As Ruth said, The central line is not painful as such. Just a weird feeling of pushing etc. what I will say is that the doctor putting it in warned me I might have palpitations for a few seconds and I did, my heart was beating wildly for about 30 seconds which wasn’t very nice but apparently it’s your body’s reaction to a foreign body being put in it (the line).

  21. lori says:

    Well the website I signed up on gave the age limit of 55, so as soon as I can psyche myself up, I am going to swab my cheek. I have already received the kit and of course I gave my correct age. @Jon- I will check into those opportunities–great idea!

  22. Vivian Tavares says:

    Hi… I just got a call yesterday that I am the match.. I am doing it.. I hope I can save a 47 years old male… Despite all the pain, it is worth it.. To help some one is priceless..

  23. Stephie says:

    For anyone still interested, I went through donation a few weeks ago, no central line, and it was fine. I have to say that if I get called again, I might ask for a central line… They tried to make it so at least one of my arms was relatively usable, but the one that was immobilized (where they put the bigger needle in) had to stay reaaaalllly still, so I couldn’t even de-hyperextend my elbow. Also, I think the bed was made of cardboard lol. But certainly not a dealbreaker by any means!

  24. Cat says:

    Hi Ruth! I just wanted to say thank you for telling your story. I found it last week as I was starting my injections and donated today! I absolutely hated the injections but thinking about how much worse my recipient has it made it all worth it. I also think my recipient has the same syndrome as your recipient. I hope the outcome is the same as yours.

  25. Ulysse says:

    I am setting up my physical exam part at Georgetown very soon. If I clear, I’m looking at Jan 6th for the donation. I am a little nervous– I know my husband is and my little boy will probably have to be calmed– he doesn’t even like when I get my eye brows done lol

    But I’m excited about it– crazy, huh?

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