When Liam Galvin met Phyl Troy at a music festival 24 years ago, he was captivated by her dynamic enthusiasm for life, as well as her loveliness. But he could never have known that while his life would be completely transformed by meeting her, it would bring him not just untold joy, but devastating sorrow too.
iam, who grew up in London's East End, had strong ties with Ireland, as his parents came from Co Waterford. "We used to spend every summer here," he says. "My grandparents lived in a cottage near Tramore. There was no running water and no electricity. But we loved it anyway."
Eventually he became a quantity surveyor who loved going to music events such as Glastonbury. In 1990, Feile, a music festival in Thurles, also known as the Trip to Tipp, enticed him across the water. And that's where he met Phyl, who came from a local family of 12 children.
Over the next few years, Liam went to subsequent Feiles, and otherwise stayed in touch with Phyl by letter. "The kind you put in an envelope. Have you heard of those?" asks Liam, laughing. Then in 1994, he decided to stay. Phyl, who had been widowed some years previously, had two teenage children, Aisling and Bradford, and they graciously welcomed Liam into their lives. In 1997, Phyl and Liam's son, Niall, was born, and a year later, they married.
Phyl, who had a degree in psychology, worked with people living with autism. As the years rolled on, Liam also became interested in the field of disability and now works with Rehab Care in Thurles.
All seemed perfect until five years ago, when Phyl's older brother DJ was diagnosed with idiopathic pulmonary fibrosis (IPF). "We were all mystified," remembers Liam. "We'd never heard of IPF, but then we learned that it has a much higher risk of mortality than most cancers."
According to a spokesman for the Irish Lung Fibrosis Association (ILFA), IPF is a "rare, chronic, progressive and terminal disease that causes scar tissue to develop in the lungs [fibrosis]. As a result, the lungs become stiff, preventing the transfer of oxygen from the blood to the lungs." He says patients with IPF become extremely breathless and fatigued and in time, have to rely heavily on oxygen therapy. Inevitably, they will suffer respiratory failure and die.
And that is indeed what happened to DJ, who passed away about three years after diagnosis. Liam says the only real hope for patients right now, is a lung transplant, and though DJ was summoned for a transplant on three occasions, he was never the best match for the available organ. Then, shortly before DJ's death, Peggy, one of Phyl's older sisters, was diagnosed with IPF; she died about four months later.
While attending DJ's funeral, Phyl, unbelievably, also began to experience breathlessness, but somehow she found the courage to have a chest X-ray. Her lungs were not clear, so she was referred to St John's Hospital in Limerick, where a consultant confirmed she was suffering from IPF. "We then split her care between St John's and Professor Egan at the Mater in Dublin," says Liam. "He's an international key opinion leader in the area of IPF. He is quite outstanding."
Even though three members of Phyl's family have died of IPF, it is not a genetic disease as such. "Idiopathic means the cause is unknown," Liam explains. "They think IPF is 'familial' - in other words, while Phyl, DJ and Peggy shared some genetic material, the IPF may actually have been triggered by unknown environmental factors."
He says though he and Phyl were absolutely devastated by the diagnosis, she soon kicked into survival mode and was determined to beat the disease.
She had been told that a lung transplant was likely; but she found it difficult to accept that she would need one soon. So she began to campaign for a drug called Pirfenidone to be made available to all who need it. Liam believes the drug is important, because it may increase the patient's chances of a life-saving transplant. Thankfully, the drug did get the thumbs-up from the HSE. "There are a lot of battles to be fought with a disease like this," says Liam, while explaining that the HSE turned down their request for a medical card five times, because Phyl stayed on in her job even though she was so ill. "Work helps keep your mind off the inevitability of an early death," says Liam. "The medical card would have eased the other worries." They were also campaigning for better access to oxygen. "They allocate six bottles a month," says Liam. "But you might use them in one day." He says the whole oxygen story became something of a nightmare, and on one occasion a driver had to travel from Galway to Cork to get oxygen for Phyl.
In November 2013, Phyl and Liam renewed their vows. The following January, Phyl became very ill and was admitted to St John's. The following week, she was transferred to the Mater's heart and lung transplant unit in Dublin. "They needed to stabilise her and complete the tests [that had already begun a while back] for a transplant," explains Liam. "On Wednesday, January 29, 2014, we had breakfast together in the hospital. Over the course of the day she got weaker and weaker; they had to keep upping the levels of her oxygen, while the readings indicated her organs were failing. I'd brought the kids to the hospital two days before, when I saw things weren't going well. At 5pm, we said prayers together. Then they told us she needed morphine. I knew what that meant - and so, surrounded by love, she slipped away."
But that's not the whole story. Liam will continue with his beloved Phyl's campaign to get IPF included on the HSE's list of serious illnesses that automatically get support. He and the ILFA - for which he has nothing but the highest praise for their "wonderful" work - will continue lobbying for urgent research into this dreadful disease, which appears to be on the increase. They also want a holistic system in place which would include not just an automatic right to a medical card, but also access to effective programmes for improving lung-function, and better palliative care so that patients can spend more time at home.
The question remains: Where is the humanity in forcing a relatively young, terminally ill, but vibrant, mother-of-three to fight for the most basic of human rights?
For more information on the Irish Lung Fibrosis Association, tel: (086) 871-5264, or see ilfa.ie
Sunday Indo Life Magazine