Will You Marrow Me?

 

Image credit: Anthony Nolan

Carlos is a 21 year old Medical Science graduate from the University of Birmingham. He’s currently working as a Trainee Analyst within the NHS and has a keen interest in liberation issues as well as science and politics.

 

Who is Anthony Nolan?

Unlike the title may lead you to believe, this isn’t going to be a rundown of this year’s prize marrows at the Royal Horticultural Society’s annual fair. Anthony Nolan is a charity started by Shirley Nolan to help find a bone marrow transplant for Anthony, her 3-year-old son. They sign people up to the bone marrow register and fund research into stem cell matching and transplants. Stem cells are basically ‘baby cells’ that haven’t developed into a specific type of cell yet. Embryonic stem cells have the potential to become any type of cell, whereas adult stem cells have limited potential. Like me.

So, why would you need a bone marrow transplant? You might need one if you sustained damage to your bone marrow, and it was no longer capable of producing healthy blood cells. Damage can also occur from aggressive cancer treatments, where healthy marrow can be destroyed as collateral damage. Or there are some conditions which affect the bone marrow directly, such as leukaemia or lymphoma.

Whenever I tell people I was a match, I’m normally told how brave I am to go through surgery for a stranger. I guess that’s why I’m writing this. Primarily to raise awareness for this register, as many people don’t even know who Anthony Nolan are, but also to try to dispel some of the myths associated with bone marrow donation.

The first and most common misconception I tend to come across is when people, slack jawed, ask me whether I’m not put off by the pain of the procedure. In fact, nine out of ten of people donate stem cells through the PBSC (Peripheral Blood Stem Cell) method, and don’t even need anaesthetic. This has the patient linked up to a machine via a needle in each arm. One removes blood (don’t be alarmed, it will be returned to you) and sends it to a machine where is it spun very fast and due to some physics law (I’m a biologist, shoot me) [Ed – it’s called density, look it up] it splits your blood into its separate components. The machine then steals your stem cells and graciously allows you to keep the rest so you can, you know, live. The other needle returns these components to you (I promised you!). The whole process takes around five hours. The cells are taken to a lab to be counted to ensure they’ve got enough, and if not, you’ll be asked back the next day for another lot of harvesting, and then you’ve saved someone’s life. It’s that easy.

This method requires you to receive an injection of a protein called G-CSF (Granulocyte-Colony Stimulating Factor). This, basically… well… stimulates your granulocyte colony. It does this to make it proliferate (divide) and move out of the bone marrow and into the blood so that the machine I mentioned previously (an apheresis machine, if you’re interested) can steal them away. Common side effects include aches in your lower back and hips, and a general feeling of malaise, although these symptoms can easily be managed with paracetamol. You will receive an injection every day in the four days leading up to your donation, and a possible fifth injection if they don’t collect enough cells on the day. Around 30% of patients need to come back for a second day.

The less common method is the one that seems to scare people more. You are put under general anaesthetic and are required to stay in hospital for 48 hours. There is a level of discomfort associated with this method, and the recovery period is longer (five days, as opposed to two). There are no lasting scars with this method, and it’s not considered to be a surgical procedure. People often describe the aftermath of this method as feeling as if they’d played a rough game of rugby. A bit sore and beaten up, but nothing you can’t handle.

I give a spit

I joined the register in my second year of university. I was staying late to work (see, Mum, I did more than just party), and was heading home to a frozen pizza (sorry, Mum, I didn’t always eat that well) when I bumped into a friend who studied medicine. She asked me if I’d joined the Anthony Nolan register and I said no – I’d been meaning to, but like much else in my life, I’d put it to one side for coursework. She ran me over to one of the seminar rooms and quickly signed me up. It later transpired that her enthusiasm came from the fact I was the first person she’d registered. The actual process was painless. I spat in a tube, I filled a form in with my personal details and medical history, and it was sent off for testing. Easy peasy.

I give my mum a heart attack

I’d largely forgotten about the whole process, swept up in the ‘excitement’ of exams and more coursework (okay, okay, and maybe some partying) until I received an email that summer. I saw it was from Anthony Nolan, so I opened it expecting a match – and was kind of disappointed to find they were only emailing me to tell me I had a common tissue type. I’ve received weirder compliments. I texted my mum, just including a screenshot of the email, which didn’t include the explanation given by them on what having a common tissue type actually means. Before I continue, I think it’s important to bear in mind my mother isn’t a native English speaker, is not from a science background, and is, well, a mum. I once forgot to do the dishes and somehow (this still remains a mystery to me) in the process of telling me off she ended up concerned that I was going to end up a drug addict stealing from my own family to feed my addiction. If that woman’s mind had legs it would have Usain Bolt beat (if it could stop worrying long enough to actually run). In my defence, I did start to explain what it all meant, but I never finished the second text because I bumped into my housemate and I was filling her in on the morning’s excitement. By the time I’d checked my phone to see if she’d replied (and to elaborate on what it all meant) she was so worried she’d practically planned my funeral already. Yikes. Sorry Mum.

I feed a small family of vampires

So what does being a common tissue type mean? Simply that I’m likely to match with someone. I guess even my genes are common. So Anthony Nolan sent some vials for me to take to my GP or local hospital and fill with my life essence to send off for testing. My GP surgery was happy to do this for me, but I was offered a service by Anthony Nolan where a nurse could be called out to take my blood from the comfort of my own home. If you ever get called to donate, you’ll find this a lot: Anthony Nolan will do everything in their power to ensure that you are not inconvenienced by the donation process, and endeavour to do everything possible to help. I was asked to provide these samples so that some of the preliminary tests could be done ahead of time. Since I am likely to be a donor, this means the patient will be waiting around less. And in a lot of these cases, time is of the essence. I fill the vials and head to the post office to send them off. I pass the parcel to the person behind the till and they ask me what the contents are. I sheepishly say that they are bloods being sent off for testing, and then I’m asked how much it’s worth. I’m taken aback. How much is my blood worth? Priceless! Do you not know who I am?!

Six months after I’d sent off this first round of tests, I received a letter in the mail letting me know that I had been matched and requesting some more blood. Again I obliged, until a few weeks later when I got a phone call from them letting me know a couple of the vials had broken in transit. Now I’m not totally sure if this is just my bad luck, or if Anthony Nolan is actually a vampire front, but I’d had enough blood drawn from me in the past few months that I’m pretty sure I could probably do it myself (DO NOT TRY TO DRAW YOUR OWN BLOOD OH MY GOD). I guess I did grow up to be using needles a fair amount, Mum.

I get lost

It seems like third time lucky with the blood tests, because in late March I receive a phone call while at work inviting me to London to have a medical done to assess my ability to donate. Anthony Nolan paid for everything, which I’m glad of when I pick up my train tickets and notice the eye watering £176.00 receipt. So I set off to London. Alone. The sub-heading for this paragraph suddenly makes perfect sense, right? I’m thankful for technology when I step off the train at London Euston and realise I don’t actually know where I’m going, but Google Maps (God bless Google Maps) has my back. Unfortunately, I’m dumber than google maps is useful. I manage to get myself lost in the 20-minute walk, on the same street, to the clinic. Somehow, though, two wrongs made a right, and I get lost again on my way back on track and end up at the clinic’s door. The wrong building of the clinic, admittedly, but the receptionist pointed me in the right direction, across the street, and everything was peachy from there on out. I entered a swanky looking building in central London and was confused by how fancy everything was.

I go into too much detail about my pee than is probably comfortable to read but seriously what the hell?

As is to be expected with this sort of thing, there are a lot of consent forms and medical questionnaires to fill out. I just hope I didn’t accidentally sign away my first born or anything. I meet the loveliest nurse, who weighs me and measures my height, takes my blood pressure and draws some more blood. Those vampires are really asking for a lot. She then presents me with a litre jug and tells me to provide them with a urine sample. A litre jug. A urine sample. I look at her, I look at the jug, I look at her, and I finally ask, “I hope you’re not expecting me to fill that?” She laughs and tells me it’s just so I don’t have to aim for the small bottle. Hurt that my aim has been challenged, and feeling a little self-conscious about my urine production ability, I head to the toilet with my litre jug (I’m still not over it). I am, as expected, defeated. I managed 500 ml, which I try to convince myself is respectable, but the rest of the jug mocks me. I wash my hands and let the nurse know there’s a jug of pee awaiting them, which I’m sure made their day.

I get a human MOT

After the pee fiasco, I head over to talk to a doctor and start my assessment. She asks me some more medical questions, and takes a listen to my heart and lungs. I remember her hands being warm (is that creepy? I just don’t want to be touched by corpse hands, sue me). She hands me some forms and tells me to head to their imaging department. Which is in another building. In London.  Panic sets in. She must have read it on my face, because she points out the map behind one of the forms which directs me to the clinic – just is a few doors down the same road. I’m thankful that enough people are so directionally inept that they’ve pre-empted this with a map – I feel less alone now. I set off (I actually didn’t get lost this time, but I did see two of the ugliest dogs ever and it took everything in me to not steal them from the owner and run away with my new children) and arrive at the clinic. I head to the imaging department and get my X-rays done (where I learn I can’t follow simple instructions when they come from an Australian because I’m too busy appreciating the accent to actually listen) and the ECG. An ECG, or electrocardiogram, is a test that uses electrical signals sent out by your heart every time it beats to track your pulse. They kindly provided me with copies of the results so I can geek over them, and since then I haven’t met a single person to whom I didn’t show my results. I’m like a proud parent, but instead of actual human offspring,  it’s of my slightly-larger-than-average heart.

I nearly get run over

Just a reminder to look both ways, kids. I get a clean bill of health, and not five minutes later nearly get mowed down by a motorbike. Great job.

I tempt fate

The injections are administered by nurses from a company called Healthcare at Home. They drive out to you (remember how I said Anthony Nolan really help you out?), administer the injections, and even stick around to ensure you don’t have any adverse effects to the GCSF. I’m told these reactions are incredibly rare, but understandably they want to stay on the safe side.

i'm a match 1

That right there is the beginning of the end. It’s me, texting my friend from a pub on a Friday night, sipping cider (which meant I wouldn’t be able to take paracetamol later, but I was feeling fine so what was the issue, right?) with a middle-aged DJ playing music too loudly for the local. It was a weird night. We head home, and after a few rounds of cards with my housemate (you blink and suddenly you’re 60) I head off to bed.

That’s when it hits me. I’m in bed in a full out starfish, trying to stretch out my back and hips. I would describe the pain sort of as if I’d gone to yoga the day before and pushed myself a bit too hard. Or like growing pains I experienced when I was younger. It isn’t debilitating, but it’s a constant dull pain that makes me want to rip my bones out. I manage to sleep regardless and I wake up feeling better. I still take a couple of paracetamol, and within an hour the pain is totally gone and I feel fine. I receive more injections and I don’t have to take paracetamol again until the last day. For some reason the pain totally goes, but when I’m due to head down to London it’s back. But again, I just pop another couple of paracetamol and it’s all good. At this point, my life is basically a Skins episode.

i'm a match 2

I’ve decided to include some photos courtesy of my housemate, whose first reaction to me getting stabbed is to take photos. Cheers, Lola, I can always count on you. Enjoy the facial expressions and me holding my own hands because I’m a grown man who isn’t afraid of needles. (Maybe just a little scared).

I get harvested

The trip down to London is largely uneventful – a few screaming kids on the train make my headache a little worse, but the train had free wi-fi so I was in millennial heaven. The evening mostly consists of me watching Netflix and working on this article before I try to get an early night. I struggle to sleep, a mixture of excitement and fear keeping the sandman at bay. The next morning I get up on the first alarm, which is a new and unfamiliar feeling for me, he who normally relies on an alignment of the celestial bodies and at least four blessings from three nuns to get me out of bed. I head down for breakfast and after I scoff down some food (scrambled eggs which tasted suspiciously nothing like eggs) I walk over to the hospital. It was around a 20 minute walk to the hospital, and when I get there I’m greeted by a Portuguese nurse.

We instantly bond over our shared foreignness, even more so because we’re from the same foreign place. She lets me get set up, and suggests I head to the toilet because it’s four hours in a bed without being able to move. I swallow my pride, and head to the toilet which defeated me just a few weeks ago. Imagine the sirens from Kill Bill playing as I walk over to it. The nurse then inserts the catheter into each arm, explaining how everything works and answering all my questions. Some more blood is taken for the vampire family living underground to ensure the GCSF has worked.

The next four hours go by fairly quickly, mostly consisting of me binging on Netflix (‘12 Monkeys’, for those of you who are curious). About an hour into the procedure, someone from Anthony Nolan comes over to thank me for my donation and explain a bit more about what will be done with my cells. I’m told that I’ll be taken off the register for the next two years so that if the patient requires a top up I’m available to donate to them. He also explains that I’ll be removed off the register if I’m called to donate to another patient, or when I’m 60 years old. He leaves, not before providing me with a goody bag with a badge, t shirt and some more literature around Anthony Nolan. I spend the remaining time spamming social media and bugging speaking to the kind nurses.

i'm a match 3

The nurse took about five photos and I look like a melting gremlin in most of them. I kept slipping down the bed but I couldn’t move my left arm so I just had to keep sinking. The whole procedure was painless – the worst of the pain came at the end when the nurse removed the tape holding the catheters in place.

I stuck around for an hour after donating, and basically sprinted to the toilet the second I had the catheters out. I was offered lunch and had the option to leave the hospital and come back when my cells had been counted, but seeing as the weather had taken a turn for the worse I opted to watch more Netflix. I was told I wouldn’t be needed for a second day and sent home. That brings me to the end of this journey, I suppose. There’s always the chance I’ll match again, or the recipient requires more cells, but that’s another article for another time.

I try to recruit you

I hope that through this article I’ve helped to answer some questions you may have about the donation process, and I really hope that if you’re able to donate you’ll put some thought into joining the register. It’s a very easy way to make a huge difference in someone’s life. Anthony Nolan partners up with 70 other registers around the globe, so you can make a difference to someone’s life anywhere in the world. How cool is that? The rep from Anthony Nolan told me that there is a centre in Cologne that harvests more bone marrow in one single day than the entire of Britain does in one week. We need more people who are willing and capable to sign up so we can help make a real change.

You can find out more at their website: www.anthonynolan.org, or alternatively feel free to email me with any question you have about (my own personal experience of) donating, I’ll endeavour to answer them: carlos95pestana@hotmail.com.

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