A year ago, at the age of 43, Tom Donohoe’s life changed when he was given the news that he has Interstitial Lung Disease.

“To start with we did not particularly worry too much, as we did not know what this condition was, and as there were several weeks/months between appointments, our mindset was that surely if this was something serious, like cancer, Tom would be seen more urgently,” said Tom’s wife Clare Donohoe.

However, after numerous blood tests, chest x-rays, high resolution CT Scans, lung function tests, oxygen saturation tests and most recently a VATS Lung Biopsy in the Royal Victoria Hospital, Belfast, the family’s worst fears were realised as Tom’s diagnosis of Idiopathic Pulmonary Fibrosis (IPF) was confirmed.

Highlighting that there is no cure for IPF, Clare said: “It is a progressive fatal lung disease that has a prognosis of three to five years from diagnosis.” Noting that IPF “kills more people each year than leukaemia, brain or stomach cancer,” Clare explained that IPF receives only a small amount of research funding, making it one of Britain’s “hidden killers”.

Speaking to The Impartial Reporter on Monday (August 19), Clare said that her husband had been to see his GP earlier that day and received the pathology report from his biopsy on August 16.

Emphasising how rare Tom’s illness is, Clare said: “The GP, his exact words when we went to him first was that he has no experience of this. He’s never had a patient with it.”

She continued: “He told Tom today (Monday) that because of his age that his only option of treatment is a lung transplant but we have yet to hear that from the consultant.”

Clare explained that in the UK surgeons will not perform a lung transplant for people over 65 years of age. “Tom is ‘lucky’ that he’s only turned 44. There’s also very strict criteria to get on to the transplant list,” said Clare. “You practically have to be dying to get on to the transplant list. You need to be very ill and a lot of people actually die waiting,” she added.

Noting how they have a six year old and a 16 year old, Clare said: “The whole thing is totally devastating, devastating for the whole family.”

“First of all living with it for the next period of time isn’t going to be easy but then we do want to know that we do have a long future ahead. A lung transplant would really be the only option,” she added. When asked how IPF affects Tom’s daily life, Clare explained that he suffers from shortness of breath, has difficulty climbing stairs and walking “any distance”. She noted that since his surgery he gets light-headed and is coughing up blood.

“It has a massive affect on daily living however the issue with this as well is to look at Tom you wouldn’t think there was anything wrong with him,” said Clare.

She continued: “So he’s been declined PIP (personal independence payment) so he has to work with this illness and he works in Balcas so he’s breathing in dust and fumes everyday which is exacerbating his problem, but financially we can’t afford for him not to work.”

Commenting that after 12 months, the family have got over the “initial shock” of Tom’s illness, Clare explained that the main problem now is that there is no support locally. “Everything I know about it is found out on online forums and the connections that I’ve made online,” commented Clare.

She continued: “I’m hoping to set up a support group locally. There is one in Altnagelvin and there is one in Antrim and I’ve been to the one in Antrim but it is only once every three or four months. At the same time it’s just somewhere for people to go to talk. For families to talk about their fears.”

September is Global Pulmonary Fibrosis Awareness month and Action for Pulmonary Fibrosis has launched a campaign to ‘Listen To Our Lungs.’ The aim of this campaign is to raise awareness amongst GPs and other healthcare professionals of the signs and symptoms of IPF which can lead to quicker, more accurate diagnosis and to fundraise for the Charity. Further information can be found at www.actionpulmonaryfibrosis.org.

“It is an awful brutal and cruel disease. It’s as bad as cancer but it’s not recognised and it’s not known,” concluded Clare.