Blood stem cell donor Louise shares her unusual donation story

24 November 2017

Louise gave someone a second chance of life earlier this year by donating some of her blood stem cells. A method of donation called peripheral blood stem cell (PBSC) collection was chosen by the recipient’s clinical team. This method is used in 90% of stem cell donations and it involves taking blood from one of the donor’s arms and passing it through a machine that isolates some of the donor’s blood stem cells. The donor’s blood is then returned to them through their other arm.

However Louise had a slightly different experience of donating in this way to most people. Due to small veins in her arms she was offered the option to donate via a special central line inserted into a larger vein in her neck.

DKMS medical consultant Dr Khaled El-Ghariani explains for us: “Louise’s case is uncommon. Whether the donor’s veins would be suitable becomes clear when bloods are being taken from the donor during their medical assessment. In the unlikely event that none of the veins in the donor’s arms are suitable, alternative options will be discussed with the donor. Inserting a central line into a larger vein in the donor’s neck is one of these options and it’s usually performed under a local anaesthetic. The alternatives will depend on the donor’s situation and what they feel comfortable with. Central lines can also be inserted in the groin.”

Here, Louise tells her full donation story:

“I think when I joined the register I did so in the belief that I’d never get called upon, after all most people are on it ages before they're matched to someone. But a few months after joining I got the call, and truth be told I felt overwhelmed and panicked. All I could think about though was someone out there who had been told there might be a light at the end of their dark tunnel and it might be me shaped, that got me through that initial shock.

After the blood test I went for my medical and I have to say it really helped to calm my nerves. I got lots of information, but more importantly, I got to see four people mid- donation all looking relaxed and calm. My nerves stayed intact even when I was told I may well need a line in my neck as the veins in my arms didn't look up to the challenge.

The G-CSF injections I received for four days leading up to my donation to help stimulate my stem cells were ok to start with, but as it built up in my system so did the side effects. Headaches and a few lower back aches were it but it was constant, so by the end I was tired and glad to get to donation day.
Louise on the way to the clinic on the day of her donation

Louise on the way to the clinic on the day of her donation

When I got to the clinic they were ready and waiting to get me over to have the line in my neck sorted. I still had no nerves so refused something to help relax me. Having the line fitted was pain free and only uncomfortable when the Dr pushed down. The nurse who looked after me while the procedure was done was lovely and we had a good chat as he wheeled me back. When I got there it was straight to business!
Louise donating blood stem cells via a neck line, an uncommon  alternative method for peripheral blood stem cell donation

Louise donating blood stem cells via a neck line, an uncommon alternative method for peripheral blood stem cell donation

The local anaesthetic wore off pretty quickly and then it kind of took a slow nosedive. My neck went from feeling uncomfortable to painful, when coupled with my remaining G-CSF headache it left me feeling teary and fighting to keep going. My nurse was great though and could see I was struggling and gave me something to help me relax, which it did. We now think it was causing me discomfort because of how it had been taped up.

My way to pass the time and distract myself was to take pictures of the bag of stem cells slowly filling up! When the donation was over I had to wait patiently to hear if there was enough stem cells to avoid a second day’s donation.

With a neck line, a second day would mean a stay in the hospital rather than the hotel, as the line would've stayed in. Less than an hour later I had the good news, I was done in one day - music to my ears.

I was nervous about getting the line out because I knew it wouldn't be pleasant but at the same time I couldn't wait to get it out! It wasn't too bad though, felt more weird than painful! After a while lying flat I was free to go, and I have to say it felt good to get outside.

People would tell me I was doing something amazing, wonderful and special. Until the end I couldn't accept that, however during my four hours hooked up I had to accept that yes it is a wonderful thing I was doing. That it is a special and amazing thing for anyone to do; to join the register and to donate.
A message from Louise’s daughter before Louise went to donate

A message from Louise’s daughter before Louise went to donate

I came to the conclusion that donating stem cells is like having a baby. Some people know it's not for them and never will be, for which they have their own reasons, and that's cool. Most people who do it have a positive experience and will happily do it again, and that is very cool. Some people love the idea of it and go for it but for whatever reason don't want to do it again. Once is enough. And that's cool too.

Everyone is different and every story is different, mine is just one of many. I have tried to be honest and open about my story, no rose tinted glasses here! I know this may put some of you off and for that I’m sorry. If it helps, the seven other people I have seen mid donation all looked happy and relaxed!!

I hope by being honest I have inspired at least some of you to register. If you're not ready yet start off with making sure you're on the organ donor register and register to donate blood. It all makes a difference, you can make a difference!

Now I am headache free, I’ve had some good sleep and I have some info on the recipient. It was one of the toughest days of my life but I am so glad that I have done it, I have everything crossed for the recipient that this works for them and they are able to have a happy, healthy life. If I was in their shoes I’d be pinning my hopes on finding a match, just like any of you.

I'm now a couple of weeks post donation. My neck has all healed and I'm feeling good, it was totally worth the discomfort of the injections, the day itself and the healing after! I am 100% certain I’d donate again should anyone need some of my blood stem cells in the future.

Thanks to Louise for being such a committed blood stem cell donor and for giving someone in need a second chance of life!

If you’re feeling inspired and would like to register, check your eligibility and sign up as a potential blood stem cell donor today. Anyone aged between 17-55 and in general good health can go on standby to save a life.

If you are not eligible or are already registered, why not check the other ways to get involved in the fight against blood cancer or help us cover donor registration costs?