November 2, 2018

Guest blog by John Barnes, peripheral stem cell donor

image4This is the story of how I gave the gift of life by donating Stem Cells.

I am a regular blood donor and during a blood donation session I saw a leaflet about joining the bone marrow register.

At the time, I understood that the process had to involve needles being inserted into your bone and the marrow being syringed out (I later learnt that the collection of bone marrow in this way only happens around 10% of the time) and I believed that this could lead to brittle bones.

With this in mind, I asked to join the register at one of my regular blood donation sessions and they just took a tiny bit more blood than they normally would. And that was that… 

Fast forward approximately 2 years and I received a letter explaining that I was a potential match for a patient who needed a stem cell donation. 

I replied by confirming that I wanted go ahead with my donation and that I was happy for my details to be passed to Anthony Nolan, who happen to be the registry (but I didn’t know that before). So, I found myself going into “research over-drive”, seeking to understand who is Anthony Nolan? what’s the process? how long will it take me ? 

Quite quickly thereafter, I gave myself a reality check, realising that I was suddenly feeling overly concerned about ME!? whereas, I wasn’t the one going through intense chemotherapy, on the edge of death, living in the hope that the chance of a transplant might save my life, IF someone was first good enough to agree to donating.

Screenshot 2018-10-25 at 19.53.20It was easy to find the answers to all my questions and frankly, if you get to this point I would wholeheartedly  recommend doing the research yourself as I personally found this helped both me and family understand the in’s and out’s of the donation process.

Anthony Nolan is an unbelievable charity, and having done my research, I felt that I wanted to give back after my donation. Please take the time to see what they do.

Team Margot started much the same way as Anthony Nolan and the work they do together is simply astonishing, bringing people of the world together to help those who otherwise would not stand a great chance of survival.

For the peripheral stem cell donation process that I went through, there’s no recovery time for the donor – I was literally in and out of hospital in a couple of hours.

As to the donation itself, my experience was that the process really is a pleasure to be a part of.

Initially, I was sent a kit to take to the doctors and to get more blood for further analysis. I understand that at this stage of the process, there are typically between two and five people simultaneously doing the exact same thing (ultimately, the person with the closest match gives the donation). I can’t remember the exact time frames but we are talking days not weeks.

I then receive a phone call from Anthony Nolan to say I was a match and that my donation would be on a specific date at a particular location. I also received a letter confirming arrangements in respect of the GCSF injections in the four days leading up to donation day, which stimulate production of stem cells, so that there are lots of them in the blood stream (making the donation itself quicker and easier).

The hospital I was sent to was amazing (which is strange thing to say about a hospital, I know !); it was a private hospital in central London, and I had an appointment to show me around and to have a chat with an expert who, again explained the process, answered any questions and made sure that I was still certain that I wanted to donate. 

In the four days before donation, I had no side effects from the GCSF injections other than a slight ache in my arm, and then suddenly, it was donation day !

I remember on my journey to London that I was slightly anxious about the process, but the worry was no longer for myself but instead was now for the recipient. Somewhere in the world, there was someone very ill with Leukaemia, laying in bed after bouts of chemotherapy, waiting for my stem cells that could possibly save their life because all other options had failed. I knew that there wasn’t anything I could do to control the outcome after donation, but the sense that someones life was effectively in my hands was humbling.

image1 (1)image1 (3)If you have donated blood before, the easiest way of describing the actual donation is an extra long blood donation session, you have a needle in each arm, blood comes out, into a machine where stem cells are extracted, and back into the other arm. I think it took about an hour. Once the stem cells have been collected, a courier takes them to the patient, who might be anywhere in the world. 

It’s as simple as that, you then have cake and a drink and you’re on your way.

It’s worth noting at this point that most employers are very good about this; it’s similar to organ donation so you should have no problem getting time off work, without loss of earnings.

After I got home and during the days that followed, I couldn’t help think whether my donation had been successful, did the person survive, are they going to need a top up donation, (after donation you are removed from the register for 2 years in case the person you donated to requires a top up of stem cells). 

image3image5Around 3-4 weeks later, I received a letter. I can’t actually put into words how I felt, but I could barely stand because I was shaking so much. I gave the letter to my fiancé to read and we didn’t speak, we just hugged. Even now, 5 years later, recalling this still brings a tear to my eye.

The letter was good news… no actually it was absolutely fantastic news: the man I donated to was responding well to the transplant and he was looking forward to spending time with his family at Christmas. I did that, I gave that man hope ! Honestly, there is no feeling like it.

After my experiences, I chose to give something back to Anthony Nolan, so I took part in the London-Surrey bike ride and raised a bucket load of cash for them.

So, in conclusion, my donation experience was an emotional roller coaster. I would do it again in a heart beat and now I want to help Team Margot raise their profile, help get their message and as many people on the register as we can. 

After having posted on my Facebook page, two of my friends signed up; it’s not big numbers but if everyone did the same, then the fight against Leukaemia and other blood cancers would be a lot easier.

Posted in: Journal