My experience of donating stem cells with Anthony Nolan

 

Wow – I wasn’t expecting that!

I’m just a normal bloke. I’m married, I have an 8yr old son, I work in a builders merchants, I play guitar in a soul band, I have a passion for cycling and I enjoy spending time with my family and friends.

That’s why the text message I received in April this year was such a surprise! At first, I thought it was just a marketing message but then a few hours later, I received a call from my wife to say that Anthony Nolan were trying to contact me and could I call them.

Being told that I was a potential match for someone in need of a Stem Cell transplant was a huge surprise – I’d actually not given much thought to the fact that I’d signed up to the Anthony Nolan register since sending off my “spit kit” a number of years ago!

So as soon as I could, I called Anthony Nolan and re-confirmed a few details with them. They asked if it would be ok to arrange for me to attend an appointment at my GP surgery to have some bloods taken so that they could see if I would be a suitable match. I agreed and waited for the appointment to arrive.

The team at Anthony Nolan took care of everything. I was contacted the following day with an appointment date and the-coordinator explained that I’d be sent a parcel through which would have everything pre-labelled for my test. I was to take this to the GP with me and then the blood samples were to be posted back to them in a pre-addressed package.

I talked it through with Jo (my wife) that evening. We were both completely bowled over at the prospect that I might be able to help someone who really needed it just through having registered with Anthony Nolan a few years ago.

Waiting….

The coordinator at Anthony Nolan had made an appointment for me to go and see the nurse at my GP Surgery so that I could have blood tests. She explained that these would look more closely at how suitable a match I was for the recipient.

The blood tests themselves were not too bad. I’ve never really been a fan of needles but tried to put my anxiety of this aside and focused on how amazing it would be if I were to be able to help the person on the other side of this process. I think the needle part itself was over in a couple of minutes and I was told that I’d hear in a few weeks as to what the outcome would be.

After that appointment, I went about my days as normal and just hoped that I’d hear something soon.

True to their word, the coordinator at Anthony Nolan called me to give me the news – I was a very good match and so we could continue to the next stage of the process.

I was thrilled! I can’t explain the feeling fully….Just the idea of being able to give someone who you don’t know a chance to be able to get better or have a fighting chance against their illness. It’s a great feeling.

My life, along with pretty much most of the people I know, has at some point been touched by someone being diagnosed with cancer. For me, it was my Father-in-law and my own mother who were both diagnosed with the illness. My mother has survived her brush with it but sadly, my Father-in-law didn’t. I think that this is why I felt more compelled to be able to help – had there been a treatment for their cancers that could be helped by a stem cell treatment, I think I’d have signed immediately and willed everyone I know to have joined up too.

 

Why did I sign up to the register?

This is probably one of the questions I’ve been asked the most since I found out I was matched with a recipient.

My wife works for a Telecommunications company and back in 2011, she came home telling me that she’d signed up to the Anthony Nolan register. I’d never heard of it before but she’d bought home some information and told me about it.

One of her colleagues from another area had organised the donor drive due to her husband (Rik Basra) having been diagnosed with leukaemia. Jo told me that she’d heard that a stem cell donation would be Rik’s only chance and that they were also asking for male donors to sign the register. She explained that all she’d had to do was to complete a form and spit into a tube…..that’s it! It was that simple!!

I thought it sounded really easy and pain free so I sent off for my “spit kit” too. A couple of weeks later, I had a card through the post to say I was registered. It went into the back of my wallet and has been there ever since!

Jo kept me posted on her colleague’s husband every time there was an update. We were pleased to hear that a few days before Christmas, he had finally found a donor and would be receiving his stem cell transplant!

Since finding out that I was a match, we’ve got in touch with Rik and Kas Basra to let them know that due to the campaigning that they have done (tirelessly and they are STILL doing!), they’ve managed to give someone else the same chance that Rik has received! They’re really happy about it and hopefully, will be using this to further promote the register!

 

Am I fit enough??

So once the blood test results came back as a match, I began to think a bit more about being in shape. I already cycle 14 miles a day for my commute to work and then fit in some recreational cycling at the weekends but I figured getting in shape a little more wasn’t going to hurt anyone. Don’t get me wrong, nobody at any point suggested to me that I needed to do this – It was just something I felt like I wanted to do before the donation. I did also have an ulterior motive for the fitness…..I’d just signed up to do a 350 mile charity cycle through work! If anything, being a stem cell donor just made me focus my efforts a little sooner!

I started to increase my cycling for training and watched what I was eating. Overall, I’ve lost around two stone and feel great!!

Something I found really useful was that I always had the same contact at Anthony Nolan. She was really helpful and answered any questions without making me feel like I was interrupting or being a nuisance. It was nice to know that there was someone on the end of the phone when I needed to ask anything.

Once the blood test results had been confirmed, the next step was to go for a full medical. Anthony Nolan sent through lots of paperwork and talked me through the whole process. I’d be donating my stem cells through a method called Peripheral Blood Stem Cells collection (PBSC). This would mean having a 4 day course of injections and then going to a hospital in London for a day to have the stem cells harvested. Anthony Nolan sent through lots of information for me to read through including copies of the consent forms which I’d need to sign at my medical. There was even a really handy booklet for my wife to read through so that she understood what I’d be doing.

My medical was booked in for the beginning of June.  Anthony Nolan made everything so easy for me – From sending a letter to my employer to let them know what I was doing, how long I’d need to be away from work, right through to booking the train tickets for both myself and my wife!! I was so impressed that all I needed to do was to collect my train tickets and get to the hospital!

 

 

London bound

The day of my medical, I’d hurt my foot! I was not in a good mood as I could barely put my foot to the floor so the thought of having to walk around London wasn’t filling me with joy.

I needn’t have worried though – The hospital was really close to the train station and the map which Anthony Nolan had sent to us was perfectly easy to follow – Even Jo couldn’t get lost!!

When I arrived at the hospital, I was greeted by one of the nurses. She took us into a room and spent the best part of an hour explaining the whole stem cell collection process from beginning to end. She answered absolutely all of our questions and really, really put me at ease. I then had some more blood tests, an ecg and a chest x-ray. I was told that I’d have a call from the Anthony Nolan coordinator again within a week to let me know that everything was ok.

Again, true to their word, I had a call a week later to say that the results had come back and everything was ok. I was then given the dates of when my injections would start and the contact details of the team who’d be delivering them.

It all started feeling more and more real at this point for me. I found myself thinking more about who was on the receiving end of my donation and whether it could be someone just like me. Truth is, it didn’t matter though…..at the end of the day, the only important thing in my mind was that whoever the recipient was, needed stem cells and this was the only chance they were going to get. I felt proud that I was in a position to be able to help and determined to make sure I was doing everything I possibly could to do it well.

 

 

So it begins….

My first injection was scheduled for a Saturday. I’d been at work in the morning and was due to drive to Reading for a gig with my band late in the afternoon. It was no bother for the Anthony Nolan guys though – they arranged for the homecare nurses to contact me and make sure that they could give me the injection at a time that was suitable. It was booked in for 1pm.

I felt a little apprehensive about having the first injection. As I mentioned earlier, I’m not a massive fan of needles and was also a little worried about whether I would experience any side effects from it. Jo is in the same band and was on standby for driving duties should I start feeling anything though.

The nurse arrived and immediately put me at ease. She put two injections into my arm and then sat having a cuppa and a chat with me (checking on me throughout the stay). She stayed for about an hour and as I felt absolutely fine, left when we were both happy.

I can honestly say, on the Saturday, Sunday and Monday, the injections were really no bother at all! I had them all at home, in the same arm and they were administered by really nice, friendly nurses! My only concern was how long I’d have to wait before I could get back on my bike again!! Thankfully, it’s looking like I’m only going to be out of the saddle for around a week! 🙂

 

The day before Donation

Tuesday arrived and it was time to travel down to London for the last of the injections. I’d already been told that the injections stimulate the body into over-producing stem cells. The stem cells then float out of the bone marrow and into the blood stream and this is where they are harvested from. A side effect from this can be that you can experience flu-like symptoms and a little bone pain. I was considering myself extremely lucky – So far, aside from a small moment of feeling slightly nauseous, I’d felt nothing other than my usual self!!

Again, Anthony Nolan had made the journey to London extremely easy by booking the train travel, the hotel stay and providing extensive paperwork with full details of where and when I should be for the remaining injection. Jo had travelled with me and used her feminine charm to get us a free upgrade to first class on the train!!

We arrived at the hospital a little earlier than anticipated but didn’t have to wait very long. I was given my last injection and we were sent on our way with the instruction of being back at the hospital for 8.30am the next morning.

Jo decided she could read the map and so we set off to find the hotel. What should have been a ten minute walk to the hotel actually took us about half an hour! Jo had decided to use the sat nav on her phone but typed in the road name incorrectly and so we walked almost 15 mins in the wrong direction! I wasn’t impressed – it was a really warm day, my overnight bag weighed a tonne and I wanted to sit down! Thankfully, we both saw the funny side and I got us to the hotel shortly after (and Jo is now banned from directing us anywhere!).

After the last injection, I started to feel a little tired and achy so we decided that rather than going out, we’d camp out in the hotel for the night. We went for dinner and then settled in for the night. Me with my fruit juice and Jo with her bottle of wine….Now you can have a small drink if you’re a donor but I didn’t want to risk feeling rubbish the next day or being dehydrated. Plus I’d decided to take a couple of paracetamol as my back was aching.

The night was quite a chilled out evening and I didn’t sleep too badly considering the donation was playing on my mind a little.

 

D-Day

On the morning of the donation, Jo and I got up early and had a breakfast at the hotel.

I was feeling pretty good. My back was still aching a little but was more like a throb than a constant pain. We set off for the hospital armed with the ipad, some snacks and a couple of bottles of water.

Upon arrival, I knew exactly where to go as the nurse had shown us around on the day of my medical. We were greeted with smiley faces and told that my bed was just being prepared. After a ten minute wait, we were taken through and taken through what would happen.

The nurse checked my temperature and blood pressure and then fitted a cannula. Some bloods were taken and sent to the lab in another part of the hospital to confirm that I was still ok to donate (and that the stem cells were present within the blood stream).

Once the go-ahead had been given, I received a local anaesthetic in my other arm and the larger of the needles was inserted. This was the arm that I wouldn’t be able to move during the donation. Then that was it…..game on!! I’d be hooked up to the machine for 5 hours. The blood was being taken out of one arm, processed through the machine which separated out the stem cells and then put back into my other arm. It didn’t hurt, it wasn’t particularly uncomfortable and the time absolutely flew by!

The hospital has free wi-fi and we’d been told in advance so we settled down to watch some “Breaking Bad” episodes. I can honestly say that I didn’t feel like I’d been restricted to a hospital bed for 5 hours! I think having Jo with me helped to pass the time too. She was passing on well wishes from family and friends every time someone asked her to. She spent ages just chatting about anything just to keep me occupied and having the free wi-fi was a brilliant touch too. I also had a visit from one of the Anthony Nolan team. She came and thanked me for being a donor, asked a few questions and answered some more for me including a couple about the recipient. It was really nice to have been personally thanked by the team and the goodie bag I was given was a nice touch too!

Once the time was up, the stem cells were whisked away to be checked in the lab and I had a half hour wait to see if I’d produced enough. I knew that if I hadn’t, I’d have needed to go back in for the same thing the following morning. We’d already decided that we were staying over in London rather than being tired out with the journey back home so it wouldn’t have been an issue.

The nurses took my blood pressure and temperature whilst we were waiting and then the call came through. I needed my body to produce 4 million stem cells to help the recipient. I’d actually produced over 10 million!! I was staggered!!

Within 40 minutes of finishing the donation, I was allowed to go. We went back to the hotel and I slept for a couple of hours. I felt tired but thought that it was probably just everything catching up with me. That night, we went out for dinner and popped into the pub for a celebratory pint! I’d done it!! Now all that was left to do was to just look after myself and recover.

I slept pretty well – only waking up in the night with a couple of aches and pains.

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The day after

So that’s it….done….Over 10 million of my stem cells are now winging their way across to a person who desperately needs them!

I feel very proud of myself, pleased that I’ve been able to give someone a real chance.  Yes, I feel a bit tired, a little bit lethargic and a little lack-lustre but do you know what….I’d do it all again if I had to!

If you’re reading this because you’re not on the register, please, please sign up – It’s so easy and yet so massively life-changing for someone if you are matched with a recipient!

Anthony Nolan do an amazing job. They make the whole process as easy and simple as it can be. They support you (and your family) every step of the way!

The way I see it is that if it was you or a member of your family in dire need of a stem cell transplant, what would you do? What would you want other people to do?

It gives a person in need a new chance at life….why wouldn’t you want to be a part of that!?

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15 thoughts on “My experience of donating stem cells with Anthony Nolan

  1. Cheers mate, I’m on the register and didn’t really know what the process would be if/when I got the call, but this has put my mind at rest! Must be an incredible feeling.

  2. Reblogged this on Books on the Tube and commented:
    Deviating from my usual topic slightly (I will start writing about books again soon I swear!) but this is worth it…

    If you’re a follower of this blog you may already know that I’m a scientist by day but you probably don’t know that since March I’ve been working for Anthony Nolan, a bone marrow registry in the UK. My job is finding donors for patients who are in dire need of a stem cell transplant and one of the hardest parts of my job is that the register is desperately short of donors. Personally I signed up as soon as I turned 18 (the age restriction recently came down to 16) but I know that the concept is very scary for a lot of people who are concerned about what it involves and have heard horror stories of massive needles being jammed in the back. Well if that sounds familiar to you, this fantastic post should allay any fears – the donation process is the same right around the world and involves a couple of needles in the arm, no different to giving blood.

    If you’ve ever considered being a donor or if the thought’s never crossed your mind, please read this post and think about signing up, you could make a very real difference to someone’s life.

  3. Hi Paul
    Very well done. I was first contacted last September then made my donation in November. I do not eat that healthy or exercise that much but my count was 15.8 million, that was a massive shock, three times as much as required. It is such an honour to be able to `Give someone the chance of life`. I received a letter last month to say my recipient was doing well, which is so good to hear. I only got a photo next to my machine as I missed out on a photo all tubed up. Reason being I was on my own so waited until the end to ask a nurse however my calcium dropped towards the end and I went all funny and faint so had the tubes pulled out and a calcium drip attached. Gutted.
    Best REgards
    Gordon Barber

  4. You absolute hero. I got a bone marrow transplant four years ago and words can never express my gratitude. X

  5. I donated 2 years ago,it was an amazing feeling knowing that you have helped someone else.i would do it again without any hesitation,like you the staff and nurses with brilliant with me,and th ehotel and food was good,plus got to look round London as well,.

  6. Well done Paul, I donated 20 months ago and have also been back twice more to donate lymphocytes to the same person after her cell count started dropping. Last thing I heard my recipient was doing really well! 😃 Your story reminded me of mine, almost word for word, and as you said, I would do it again tomorrow!!!
    Keep spreading the word my friend 😃
    Best regards
    Terry

  7. I signed up to the trust in the mid 80’s, I was about 35. In the 90’s I was a possible match but that came to nothing, it was 2004 when I was required to be a donor aged 54, so keep yourself fit as I did. The problem with most older people on the register is their health, the blood quality or their general health suffers and stops them donating. I was still fit enough to donate again aged 59 and the doctors at the London Clinic when I last donated said they couldn’t remember anyone my age donating, certainly not to a stranger. It may have happened as a last resort from a family member but he’d never heard of it. Obviously unless the donor is able to offer quality blood/stem cells they are as likely to kill the patient as save them. As everyone keeps saying it is so easy to save a life so get on the register.

  8. I knew nothing about this despite being a regular blood donor as well as fully signed up on the bone marrow and organ donor registers. Now there’ll be another one added to my list! Thanks for an informative and inspirational read 🙂

  9. Pingback: Northfield “hero” shares experience as life saving stem cell donor | B31 Voices

  10. Hi,

    Great post.. I searched for this because I have received the call and given my blood sample. I was just wondering how long you had to wait after the blood sample to hear if you were a good match? I was told it can take up to 8 weeks and it’s been about 3 and a half, but I’m sure as you can imagine I keep thinking about it and so badly want to find out if I am the best match quickly!

    Thanks,
    Olivia

    • Hi Olivia

      I think it took around 5 weeks for the results to come back.

      Fingers crossed that you’re a good match and get to go ahead with your donation- it’s an amazing thing to do for someone!!

      Good luck

      Paul

  11. Hi Paul
    I have only just read your story on giving stem cells and I can feel the joy you felt at helping save the life of another human being. In 1977 my youngest son died just before his 8th birthday. he was very ill and needed a transplant. He was only ill six weeks and we had spent time in three hospitals and finally at Hammersmith, were many people from the public came to see if they would be of use, even the police force. Unfortunately he died before a donor could be found. in those days things weren’t as advanced as they are today. When I hear of people like yourself who have given of their time to help someone I feel so happy and proud of you all.
    I just wanted to say that people like me who had to go through so much watching our son die really appreciate what you did and cant thank you enough on behalf of the person you helped.

    Love Lorraine xx

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