Reflection on what it means to be a bone marrow donor

There is a willingness to create greater awareness about the Global Bone Marrow registry but an apprehension about registering and taking the time to be tested. I have reflected on my experience as a bone marrow donor and shared it here in the hope that any apprehension will be eliminated and there will be a surge in demand in join the registry to match the goodwill on social media.

A new year dawns

As 2001 came to a festive close and we embraced the first days of 2002, my beautiful sister Anne was finding it hard to shake off flu-like symptoms. Within a few days, a series of medical tests had confirmed that Anne was dealing with something far more sinister – Acute Myeloid Leukaemia (AML). On hearing the diagnosis from my heartbroken parents, the only word I zoned in on was leukaemia. In the frantic search for information, I found myself zoning in on the negatives and the worst case scenarios.

Leukaemia is cancer of your white blood cells and bone marrow. Bone marrow is the place where blood cells are made in your body. With leukaemia, immature blood cells divide quickly and do not grow into mature cells. These immature cells crowd your bone marrow and prevent it from making normal healthy cells…

Leukaemia can be divided into two main groups depending on how fast the disease develops. Acute leukaemia develops quickly, whereas chronic leukaemia develops more slowly. The word ‘acute’ does not refer to how successful the treatment will be.

Preparing for battle

My family have been immersed in sport all our lives and we were accustomed to preparing for competition of different types. After the shock and negativity subsided, we ‘circled the wagons’ and were determined that we all had to support Anne as best we could. No point in us wallowing in self pity and a doomsday outlook. In the meantime, Anne was ready for the fight and it still amazes me how she remained so determined, tough and positive throughout.

Securing a match

Chemotherapy and radiotherapy were part of the tough treatments Anne faced, battled and endured. Under the direction of Drs Enright and Conneely in Tallaght and St James’s Hospitals respectively, Anne’s treatment plan was progressing well and we all appreciated that she had to get quite sick in order to get better.

It was also clear that a bone marrow transplant was required. My sister Deirdre, brother Dónal and I were all tested for compatibility and it turned out that both Dónal and I were matches. With Dónal facing his Leaving Cert in a matter of months, the decision was quickly made – I was delighted and honoured to be the donor. The date of the transplant was set for 13 May 2002 and treatment was carefully managed up to that date.

Avoiding infections

In the weeks leading up to the treatment, I was certainly apprehensive but never fearful. The transplant team in St. James’s explained all the steps clearly and professionally and ultimately, this was a small procedure with minimal discomfort in the hope that the recipient (my sister Anne in this case) would be gifted with long life again.

The treatment team had mentioned that the transplant might be postponed if I picked up any infection. In hindsight, I recognise that I had a heightened sense of awareness when it came to any threat of infection. I moved away from people with the slightest sniffle or if they complained about some ailment they had. I worked on my own physical fitness in the hope that the bone marrow to be donated would be of the highest quality.

Songs getting into my head

On Thursday 9 of May, four days before the transplant, I was working in Maynooth and agreed to go a concert in the Olympia with good friends Donna and Enda. I was reluctant to go for fear of picking up any infection but Natalie Merchant was in Dublin for a rare concert appearance and it was a welcome distraction. Natalie Merchant has an enchanting voice and the concert was a surreal experience for me. Her first song was Wonder with the opening lines of:

Doctors have come from distant cities, just to see me

Stand over my bed, disbelieving what they’re seeing

They say I must be one of the wonders of God’s own creation……..

I was rooted to my seat, transfixed and almost believing that the opening lines were directed at me and the doctors were going to visit Anne in the coming weeks to see the miracle of her recovery. Natalie Merchant explained the real story behind the song but in that moment, it was good enough for me to extract the positivity I required.

Mehmet SAYGILI / Vimeo

When considering life and death, thoughts wander from peaks to troughs and various shades of light and dark in between. Later in the concert, one of her songs deals explicitly with death and this was also a possibility in the weeks ahead if the treatment did not proceed as hoped. In the midst of all the lines about loss and mourning comes the line:

‘It’s you I can’t deny…..’

… and that was enough to keep me on track. It was strange that the thought processes were zoning in on terms I would usually have missed and I would usually have concentrated on quality of voice and accompanying melody.

Transplant day

Monday, 13 May 2002 eventually dawned and I was in St James’s hospital since the previous evening. I called to see my sister and we wished each other the best of luck. All the steps were explained again and as the anaesthetic began to course into my body, the anaesthetist challenged me to count backwards from 10 to 1. I think I made 7!

Coming around from an anaesthetic-induced sleep is never pleasant but I was relieved to hear that the team had a good harvest of bone marrow. I was quickly back in the ward waiting for the nauseous effect of the anaesthetic to go away.

Watching the transplant

In the meantime, Anne was awaiting the transplant to be administered, accompanied by my mother and sister whose life had been selflessly changed into Anne’s Dublin-based minder while the rest of us got on with our lives in Mayo.

A number of tests were performed first to ensure all was fine. I was able to make my way to Anne’s ward to see the bone marrow being administered to her.

Watching a bag of bone marrow that was in my hip only a short time previously making its way into my sister’s veins was a strange experience – made all the stranger by the periodic waves of anaesthetic still surfacing from time to time to produce what felt like mild seasickness.

That was the sum total of the discomfort as far as I was concerned.

Anne experienced a whole lot more sickness and pain in the months ahead but beat the leukaemia. I cannot recall any after effects. There may have been a sense of tiredness but I put that down to the concern I had about Anne’s survival. When Anne went into remission, there was no tiredness then but a real sense of accomplishment.

Let no one tell you that a bone marrow donation is a tough procedure – it is not! Do not give it a second thought!

The most common procedure

The bone marrow transplant procedure detailed above is not the most common one faced by donors called from the bone marrow registry. Most donors are asked to undergo a peripheral blood stem cell (PBSC) collection with no anaesthetic required.

On the 26 November 2013, I underwent this procedure.

Blood is extracted from the left arm, fed into what looks like a complex dishwasher, and then back into the right arm. For this procedure, the stem cell donor is given injections to increase the number of stem cells in the peripheral blood circulation. It is these stem cells that are harvested by the machine.

Blood flows into it, it is spun to separate the components; the stem cells removed and you get everything else back. Apart from an initial sense of blood loss, there is nothing to this procedure either apart from a few hours boredom.

Having three beautiful kids under four at that stage in my life, it was actually a few hours of calm rarely experienced. Now in the era of mobile devices, I was able to capture some images as I passed the hours away.

The marrowmatch.eu campaign launched by the friends of Paul Giblin is an excellent way of raising awareness about the Global Bone Marrow registry and how it can provide a match for Paul and sufferers of these dreadful conditions all over the world. It is very easy to retweet messages on Twitter and favourite postings on Facebook. It only takes time and conviction to register and follow through with a test for suitability. It has changed my outlook on life; it saved my sister’s life.

Over to you! Don’t leave it others!

In a follow-up post, Anne Gallagher wrote the following on Facebook:

As most of you already know, in 2002 I was diagnosed with Acute Myeloid Leukaemia. Doctors advised me that my best chance of survival was to have a bone marrow transplant. My three siblings were tested for suitability. I was blessed that my brothers Sean and Donal were both perfect matches. Donal was studying for his Leaving Certificate at the time, so on 13 May 2002, my brother Sean donated bone marrow for my transplant. I wouldn’t be alive today if I didn’t have that life saving treatment, and am eternally grateful to Sean.

Full details of the Bone Marrow registry service can be found here.

Army officer Paul Giblin is getting married tomorrow. He needs a bone marrow match by January

Poll: Would you donate your bone marrow to someone you don’t know?