Last month, I donated stem cells to someone I don’t know. I wanted to write a little bit about it, because I don’t think nearly enough people know how astoundingly easy the process is, and I strongly suspect more people would contribute if they knew.
So here’s the thing. If I understand it right (this is going to be a very crude description—sorry) then blood does a lot more than carry oxygen around your body; amongst a multitude of other things, it’s also crucial to your immune system, and how your body transports nutrients and waste. Healthy blood is maintained by stem cells, which are stored in your bone marrow.
Leukemia is cancer of the blood. If you have leukemia, your blood loses the ability to replicate and filter itself, and so your blood systems, and therefore everything else, collapse. Chemotherapy can kill the cancer, but also annihilates your stem cells and your ability to produce more. To survive chemotherapy, you therefore need a gigantic transfusion of healthy stem cells.
Matching stem cells is hard. It’s really, really hard. There are some extremely specific genetic factors that go into making a match, and if they don’t line up exactly so, then the transfusion will fail. When someone has leukemia, members of their family or friends will often throw themselves at the chance to donate, but that’s seldom enough of a spectrum to work from. The nurses told me of a man with ten brothers and sisters. None of them was a match for his stem cells (he found a match elsewhere, thankfully).
It’s therefore so, so, so important that as many people as possible register with the databases. The more people who sign up, the wider the range of options becomes, and the more likely it is that a match can be made.
I became involved in this because I give blood. I signed up as a stem cell donor during a regular blood donation clinic by asking for an extra sample to be sent to the British Bone Marrow Registry. That was about three years ago. A year or so after that sample, I was flagged as a potential stem cell donor, and the BBMR sent me a pack of blood tests in the post. These were completed by my GP and promptly sent back in the mail. From this extended test, I was actually ruled out as a donor, but it gave them a complete profile of my blood. Last December, when I came up as a potential donor for a second time, they already had all the data they needed. I was still willing to donate, and so the BBMR passed me over to the Anthony Nolan Trust.
This blog post is about what happened.
On December 21st I took the train to Sheffield, then a taxi to Royal Hallamshire Hospital. Over the course of two or three hours, I had an X-ray and an ECG, they measured my BMI, I gave a dozen samples of blood and one of urine, and spent about an hour talking to a doctor about my medical history and the apheresis process.
What’s apheresis, you ask?
I’d never heard of it either.
Remember how the stem cells are stored in your bone marrow? There are two ways of getting them out. The first is an operation conducted under general anaesthetic, in which a core of bone marrow is removed from your hip. Honestly, that freaked me out. I would still have done it, even though I really, really didn’t want to, but it turns out that operation is quite rare these days—it’s only used in about 5% of donors. For all other cases, they use a process called apheresis, where the blood is removed through a needle, spun in a centrifuge, the stem cells skimmed away and saved for the patient, and the rest of the blood returned through a second needle:
As a longterm blood donor, the thought of this process didn’t worry me at all—particularly when compared with the prospect of the full hip operation. This is why I’m writing this post. Everyone I’ve spoken to about this has said incredibly nice things to me, as though I’ve been making a gigantic sacrifice. I really, really haven’t. It was easy. I’m not being humble, self-deprecating or disingenuous.
It was easy.
We’ll come back to this later.
Back in Sheffield, my medical was finished by teatime. I took the train home that night and went to a pub quiz. A few days later—just after Christmas—I heard back from the Anthony Nolan Trust. My medical was all clear and my blood samples were good. The day of the donation, or ‘harvest’, was set for January.
Stem cells are stored in your bone marrow. They needed to be pushed into the bloodstream to collect them through apheresis and so, in the days prior to the harvest, I was visited by nurses—twice at home, and twice at work—who injected me with a growth hormone called GCSF. This stimulated my body to produce countless more stem cells than I could ever need, and flushed those cells from my bone marrow into my blood. I’d been warned that these injections would make me feel very achy, and set about the next morning like a glass man, only to find that actually, I was completely fine. When I’m hungover, I occasionally get aches in my joints. To begin with, the side effects of the injections were no worse than that. After my fourth injection, my knees and hips became a little sore, and at a couple of points my legs nearly buckled. They didn’t, though. So that’s good.
Almost immediately after the fourth injection, Mon and I took the train back to Sheffield, where we stayed in a hotel a few minutes from the hospital. We set off for the Royal Hallamshire first thing next morning. Within minutes of arriving, I’d been wired up to the apheresis machine. There were tubes and wires everywhere, but as the donor, it was very simple—I simply let them get on with it. A needle went into the crook of my left arm. This extracted my blood into the machine, where it was spun in a centrifuge. The centrifuge imparts massive gravity on the blood, which then separates into its constituent parts. The machine skims off the stem cells, and a little plasma to help the transfusion, and then the remaining red blood was returned into my right wrist. I sat like that for three and a half hours, in which time I read The Assassin’s Apprentice by Robin Hobb, which I’d been meaning to get around to for ages. (It was very good.)
About halfway through the harvest, an Anthony Nolan volunteer came to talk to me about the next stages in the process—for me, and for the patient. By the time my donation was complete, a courier was already waiting to collect the stem cells and go. And that was that. We stayed that night in Sheffield, took the train home next day, and I went back to work.
I’m being completely honest in this post, so please believe me when I say this: the single most painful part of the entire process was when the nurses ripped off the bandage that held the needle in my wrist, because that took a block of arm hair with it.
People think I’m joking when I say this. I’m not. I’m really not. That hurt most.
Yes, the GCSF injections made me ache.
Yes, the needles sting, and there are a lot of injections and blood samples.
Yes, my arse went numb from sitting still for three and a half hours.
Yes, I was a little achy for a perhaps a week afterwards.
But that’s it. Hand on heart—that’s the net sum of my discomfort.
My stem cells have gone somewhere, to someone. I know nothing about the patient except he’s an adult and he’s male. He might be in the UK, or he might be on the other side of the world. I don’t know, and I probably never will. It doesn’t matter. That’s not why I donated. I donated because my daughter is four years old and if I was diagnosed with leukemia tomorrow, I’d want a stem cell transfusion, and I wouldn’t care where it came from.
There aren’t enough people on the registers. I’m writing this because every single person I’ve spoken to believed the process was difficult, dangerous and a gigantic sacrifice on my part. It isn’t. I’ll say again: it was easy. I’m almost ashamed at how easy my part of it was, and I’ve been profoundly humbled at the humour, skills and grace of the people I’ve met along the way—my contact at the Anthony Nolan—the nurse who came to my house through floods to inject the GCSF—the doctor who spent a patient hour talking me through the process—the woman who came this close to losing her husband to leukemia, and visited the ward to tell me why he survived—the nurses in the apheresis clinic, laughing about the snooker on the telly, even as their eyes flicked to the machines, to me, to the bags of blood, always evaluating, checking, deciding—to the man who sat beside me in the ward, another stranger on another machine, donating his stem cells because he could.
This has cost me nothing. The Anthony Nolan Trust paid for my trains, my taxis, my food, my hotel. College gave me paid leave (though the Anthony Nolan would have covered me for loss of earnings if they didn’t). There are centres in Sheffield and London. If you’re aged 18-30, you can register directly with the Anthony Nolan, who’ll start things off by sending you more information. If you’re over 30, then ask at your blood donation session for an extra sample to be taken for the British Bone Marrow Registry. If you’ve never given blood before, then start with that and see how you feel about the process. If you have given blood before and still aren’t sure, then consider donating platelets for a quicker experience of apheresis.
I’m not writing this to guilt-trip anyone into registering. There are a host of reasons why your blood is better off inside you than inside someone else, and that’s fine. You might be phobic of needles, or have a family history of chronic illness, or simply not want to, and that’s completely OK. But I hope, for those of you that can donate, that this has illuminated the process a little from a donor’s point of view. If anyone wants to ask me questions then please, please do. I’ll be happy to answer what I can.
Any regular readers of this blog know that I want to write. I hope to be writing all my life. I want to live from my writing, though that’s many years away, if it ever happens at all. But I know this: if one person reading this signs up to the registers—just one—then this is the most important thing I’ll ever write. All my silly stories about mirrors and memories and mandrakes and mud are just a fart in the wind compared to life—real life, actual life, shaved away in seconds—tick, tick, tick, tick, tick.
The question isn’t why you should want to save a stranger, but how you feel about the situations being swapped, and a stranger saving you.
12 thoughts on “Stem”
Hi Simon. I am Lara’s mother; you may have heard about her (Match4lara) recently in the press. We have just had the great news that a donor has been found for her despite the odds and as I may never have the chance to meet/know who her donor is, I wanted to take this opportunity to thank you, and all the other donors, for the gift you have given to those needing transplants.Thank you, thank you
Hi Supanya! I’d absolutely heard of Lara, and I’m so happy that she’s found a match – that’s such amazing news. Thanks for your thanks, but none required. This is the least I can do. All I want now is for people to know how easy it is to donate! Much love and good wishes from rainy Cumbria – simon
Wonderful blog Simon has inspired me to register initially for blood then stem, as (like many others I’m sure) there are many urban myths about how painful (or as you describe -not) it is to donate.
Also love the way that you write and am sure you have a bright future in this as well-let me know when you get your first book published!
That’s absolutely fantastic, Darren — well done! I hope your blood donation goes really well. There were definitely some small nips and aches along the way, but absolutely nothing like popular opinion believes. I’d do it again tomorrow.
Working hard on book two at the moment – the first book is already out in the wild, doing whatever it does!
Thanks again for signing up — I hope your journey is as incredible and rewarding as mine.
Simon – I’ve never left a comment on a blog before but I wanted to say what a fantastic piece this is. My husband had leukaemia and needed a stem cell transplant. Very sadly it wasn’t successful and he died in March 2014. Whilst our story did not have the happy ending we so wanted, there’s not a day that goes by when I don’t feel grateful to the donor for at least giving Matthew an opportunity to get better.
I have been a blood donor for several years but following our experience, I went on a bit of a mission to get more people donating blood (Facebook page ‘Give Blood, Give Hope -Challenge 41’). I think it’s only through sharing our stories that we can hope to inspire people to donate. I really admire your efforts to spread the word about the hope that donation can give to families. I will be sharing your story and hoping it prompts more people to sign up. Best Wishes
Dear Fi – thank you for this, and I’m so, so sorry it didn’t work for Matthew. I can’t imagine how difficult it must be to lose someone you love. That’s amazing of you to encourage people to give blood – I sometimes think all we can do is share how simple it is and how important it is. And as you say – to share our stories. Very best – simon
What a wonderful blog Simon! Thank you for giving even more of your time to write such a powerful and inspirational explanation of the whole process. I’m sure your story will encourage many more potential donors to join the register. I was lucky to have the opportunity to visit you whilst you were donating. Thank you for making me feel so welcome. It was a real pleasure to meet you and Monica. You’re incredibly humble but what you’ve done is truly amazing. Thank you for giving your time so freely for such a vital cause. But above all thank you for joining the register and for donating. Someone like you saved my husband and that means our young daughters can grow up knowing their daddy. No words can express our gratitude x
Hello again Helen! It was wonderful to meet you during the harvest and talk through the next stages of the process. You were so kind to give up your time and come to meet us, and you were really helpful. I couldn’t be happier that it all worked out for your family. It’s an amazing community. Thank you!
I have been giving blood for a couple of years now and have been meaning to sign up to the Anthony Nolan register for a while. Today I wanted some further information on the process and came across your blog. Tonight I will be registering 😊
Good on you, Erin, both for the blood and the registering. It makes a difference.
The illustration on your page for the apheresis process is great! Did you make it? It would be a wonderful visual for a project I’m working on.
Hello — not my illustration, I’m afraid. I’ve magpied it from the internet somewhere. Good luck with your project!