Monday, 26 June 2017

Becoming A Stem Cell Donor

I've just got back from a run. A short, slow, difficult run. I'm trying not to beat myself up about it because it's the first in almost two weeks and the first bit of exercise I've done since donating stem cells. I was warned that it would take a while to recover my energy and as someone who's fairly fit and used to exercising 5 times a week or more, it's frustrating, but I wouldn't change a thing.

First Contact
I honestly can't remember when I joined the British Bone Marrow Registry, but it must have been over six years ago. It just seemed like a good thing to do and just s with the organ donor register, I promptly forgot about it; until a couple of months ago when I got a letter from Anthony Nolan saying I'd been identified as a potential match for someone in urgent need of stem cells and would I be willing to go through some tests to see if I was a good match? Dean, my partner, was apprehensive when I mentioned it, worried that I'd be put out of action for weeks or months but an operation to take marrow from my bones, but a leaflet accompanying the letter outlined a far less invasive way of harvesting stem cells these days.

Am I A Match?
A phone call later, having been assured that every effort would be made to work around the various sporting events in my calendar, and a blood sample kit was on it's way to me. I found a local drop in centre who drew the samples and it was all posted off same day. So far so good. Then a wait.

Being a match for someone requiring stem cells isn't just a case of matching blood type, rather human leukocyte antigen (HLA) typing is used to match you with a donor. HLA is a protein – or marker – found on most cells in your body which your immune system uses to know which cells belong in your body and which do not.

Some days later I got another call. I was the best match of everyone contacted in this case (a 10/10 I later found out)... am I still willing to go ahead? Yes! On to the next step...

Full Medical
The lovely Cynthia at Anthony Nolan was my main point of contact throughout this whole process and so she now explained to me that I would be required to go for an extensive, but not invasive, medical examination. She made all the arrangements with the hospital, arranged my travel and generally made it all as easy for me as possible.

I spent about 3 hours at the hospital, under the care of a Lady called Cat, who escorted me through the various departments I needed to visit. ECG, X-Ray, more blood tests, pages of health questionnaires, a chat with the doctor and finally a visit to the Apheresis department where the donation would take place. It was a small room of five chairs hooked up to the machinery used to collect or deliver blood components. I met the nurses who would be looking after me and got to ask questions. I also got a full explanation of the donation process to take away; useful for showing to friends and family.
The Apheresis machine

Pre-Donation Procedure
I got a fairly glowing result from the medical (hurrah!) so two donation days were fixed (with the hope I would only need one) and Cynthia arranged for Healthcare at Home to visit me in the four days prior, to administer the G-CSF injections that would stimulate the excess production of stem cells in my own body so they could be harvested. Once again the process was made as easy and undisruptive as possible.

The injections themselves were fine. My dosage wouldn't fit into one syringe so I had two injections a day, alternating arms. On the first day the site was a little sore, and over the next three days I started to get some mild headaches, a little dizziness, a few aches, but nothing that the recommended paracetamol didn't relieve.

Donation Day!
I had to be at the hospital at 8:30am on the donation day. Anthony Nolan had once again been brilliant and posted out an Oyster day for me to use, as well as one for my mum who was accompanying me. Had mum not lived so close to the hospital we would have had a hotel arranged too, and any food or drink we needed on the day were to be covered too. Having been to the department before helped with any nerves I might have had. One more blood test was done on arrival to check the G-CSF injections had worked then it was time to be hooked up to the machine. I was to be there for around four hours! Whilst this was going on, Lesley from Anthony Nolan paid me a visit so see how I was getting on, to tell me even more about the process and drop off a goody bag with a pin badge, pen, more info about aftercare and a t-shirt (apparently if you donate a second time you get a hoody... not sure if this was serious).
All hooked up
I had two lines inserted in my arms, the one in the left took the blood out and into the machine where the stem cells and some plasma were extracted, and the one in the right was used to return the blood to me. It was all virtually painless and I was made very comfortable. The nurses fetched us drinks and I got a great snack box at lunch time. I wasn't able to move my left arm but mum and I chatted and I read some magazines I'd brought with me to pass the time.
I'd been warned that my calcium levels may drop and to look out for tingling in my fingers and lips. What I actually experienced was more like a vibration through my whole body which made me feel quite tired and ill, but the nurses put my on a calcium boost and monitored me until I felt a bit better. My blood pressure had dropped so the procedure was paused while I recovered but it was all over pretty quickly. It turns out to be very common and I was given a check up after the donation to make sure I was back on an even keel.

The whole thing lasted from 10:30am to 2:30pm, at which point I was unhooked, another blood test done, and my donation went away to be checked. They'd managed to get twice as many cells as needed, which I was overjoyed about, so after a few more blood tests on me, I was free to go!

Facts about the donation
  • If not enough stem cells are collected on the first day, you have to go back for a second day. Thankfully, I didn't.
  • Any excess cells are stored for further use, initially by the recipient and then for research (having given my consent for this).
  • I'm not allowed to know anything about the recipient of my donation for two years, save for broad age group, gender and how their weight compares to mine (heavier people require more cells apparently). If, after that time, they are happy to be in contact with me, I may find out more but I'm allowed to pass on messages via Anthony Nolan.
  • I may get called up to donate for the recipient again within the two year time frame, and after that time I go back on the general register.
  • You're only allowed to donate to two recipients.
  • The recipients blood type eventually changes to the donor type!
  • Donation from bone marrow still happens but only in about 10% of cases.
  • The donation could go anywhere in the world and has to be accompanied in transit at ALL TIMES. Lesley took some to Australia once and had to take it on loo trips.
  • Every 20 minutes someone in the UK finds out they have a blood cancer and around 2,000 people in the U need a bone marrow or stem cell transplant every year. This is usually their last chance of survival.
  • 75% of UK patients won’t find a matching donor in their families. 
  • Currently, only 60% of patients can find the best possible match from a stranger, and this drops dramatically to 20% if you're a patient from a black, Asian or ethnic minority background.
After my donation I had to take magnesium and potassium supplements and have repeat blood tests as the doctors weren't happy that my levels were high enough. The nurse talked them out of putting me on a drip on the condition that I took a prescription and came back the next day for further checks. On balance it was the least disruptive option, and meant I could go home that night.
Magnesium tablets. Four of these four times a day.
Lesley had suggested that a Guinness would be a good idea, and as our train home was delayed we popped into the pub next door for a "medicinal". 
Doctors orders.
You feel tired afterwards. You might not realise it at first but I started to notice that things that I'd normally have taken in my stride left me feeling wiped out. The aftercare notes suggest no strenuous activity for 48 hours, which I duly adhered to, but two days after donating, just three hours of Personal Training (others, you understand, not myself), left me ready to flop on the sofa for the rest of the day. Hence why I've left it a while before attempting a run. Luckily I have no big events in the immediate future but I'm missing my training. Both my mum and Dean have been trying to feed me up, get me to rest, and as a result I'm feeling a bit softer around the edges, but I need to be patient. 

The impact this has had on my life, compared to what it will do for my recipient, is nothing at all. It's giving them a chance at a better life, an extended life, perhaps to see children they wouldn't otherwise have met... who knows?!

I've not written this post to get praise or recognition. A few people have said I'm brave, but I don't feel it. It's just a thing I've done to help someone because I can. But what I do hope to achieve by writing this, is to give people a real-life insight into what's involved. To show it isn't painful, or scary. To hopefully encourage someone else to put themselves on the register or to say "yes" when they're contacted. Or maybe just to remind someone to give blood, or donate platelets. It all helps, probably more than you realise!

Join the Register
To join the Anthony Nolan register you need to be between 16 and 30 (you stay on until you're 60) but there are other registers with different criteria that are worth looking at too.

If you're already a blood donor, or willing and eligible to give blood, you may be able to join the British Bone Marrow Registry, run by NHS Blood and Transplant, by giving an extra sample at your next appointment. NHSBT accepts men aged 17-40, as well as women aged 17-40 from mixed or minority ethnic backgrounds.  

DKMS UK registers people aged 17-55. You can sign up online, or at a recruitment event.
All patched up!
Do you donate blood? Or platelets? Are you on the register or know someone who's received treatment because of it? I'd love to hear your stories.