Cavan man, Francis, is a regular visitor to the Mater. His battles throughout the last forty-one years mean he understands and appreciates – more than most – the vital importance of the National Heart and Lung Unit at the Hospital.
“I was born with CF (Cystic Fibrosis), which was diagnosed when I was four to five months old. There appears to be no history of it in my family. My Mam, Dad and brothers were not affected by it in any way. I remember as a young lad being in and out of hospital and missing quite a chunk of primary school as a result, but generally things were okay.
“That started to change from about the age of eight when the condition got more severe. I was more regularly in hospital. Although I was clued-in enough to ensure I was taking all the required medication, nebulisers, etc. – as I wanted to hold on to as much independence as I could – eventually my lung function deteriorated and a transplant was the only solution.
“At that time, they didn’t do the required transplants here in Ireland, the only option was to go abroad. I chose a hospital in London. After going through the initial assessments, 18 months on the waiting list was followed by a heart and lung transplant in June 1995, when I was 13. Although my heart was healthy – because the heart and lungs work so closely in partnership – it was decided to transplant both. That meant my heart could be given to someone else – a domino transplant.
“I recovered well, started the physio and was moving around the hospital a bit more. Seven to ten days later, heading down a corridor, I met a young girl in a wheelchair coming the other way. My Mam said, “That’s Victoria, she’s the girl that got your heart.” It was such a strange feeling and connection, impossible to explain.
“Ten years later, in 2005, after some episodes of chronic rejection, I was back in London for TLI (Total Lymphatic Irradiation). The TLI treatment was very tough, having to lie on my back for extended periods, losing a lot of body weight and spending months away from home. While I was there, I’d heard Victoria was in the hospital and very unwell. Towards the end of my stay, I was able to make it down to the coffee shop. The first people I met were Victoria’s parents … they were heartbroken; she was gone.
The Mater’s Heart and Lung Unit takes over care:
“Having the Heart and Lung Unit open in the Mater in 2003 was a really big step forward for Irish transplant patients, and they were able to take over the bulk of my care. When I went there first, it was a tiny three or four bed unit. However, since then the facilities and expertise have vastly improved, and so many patients are catered for. It’s great to see how it has come on in leaps and bounds.
“The years since 2005 have presented a number of challenges: renal failure, dialysis and a kidney transplant -a consequence of the immuno-suppressant drugs needed to reduce the chance of rejection.
“I work through the challenges as they come and try not to worry or let my mind wander. I walk and do some cycling around the hills of Cavan to stay as healthy as possible. It’s good for the head and helps give me as much ‘capacity’ as possible to deal with what I’m facing. Ever since my first transplant I’ve continued to keep a record of my lung function, of what I’ve eaten during a day, what I’ve done, medication, etc. – I have books of them at home. I no longer need to keep doing it, but to me it’s a practical way of monitoring and giving myself ‘the best chance’. I owe that to my donor.
“Sometimes, it’s mad to think that I’ve lived more years with someone else’s organs rather than my own.
“I’m up to the Mater for check-ups every couple of months – my heart and lungs, kidney and dermatology appointments can all be done there now. It’s such a better patent experience, and it’s vital that the support is there for that to continue and give transplant patients the best level of care.”
Francis Boylan, Cavan
You can donate to the Mater Hospital Foundation here – www.materfoundation.ie/donate/ – to help us continue to support transplant patient care at the Mater Hospital.