Personal Experiences
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Fergus Goodbody
Fergus suffered from Lung Fibrosis for a period of about four and half years from the autumn of 1997. Up until this he had been relatively healthy except that he suffered from Ankylosing Spondylitis (spinal arthritis), diagnosed in his early 20s, which required him to undertake daily exercises for half an hour to loosen his vertebrae and to take anti-inflamatory medication (Feldene).
He tried not to let either of his diseases get the better of him. He had continued as a member of the Rowing Club while a student at Trinity College in the 1970s, was a keen walker, enjoyed the odd swim and preferred to cycle rather than using a car. Latterly, he visited the local gymn at least two if not three times a week. He enjoyed travelling abroad and was a commited member of the Culwick Choral Society. Most strenously of all, he ran a solictor's practice solo, from his office at home. He was also the Secretary of the Clonskeagh Residents' Association and the Co Chair of the Dunlaoghaire Rathdown County Council Community Forum. He was careful about what he ate, always a well balanced diet, avoiding convenience foods at all costs. He never smoked a cigarette in his life, loathed coffee and avoided alcohol but would have the odd drink when pressed. Sweet foods, especially chocolate, did not suit him and resulted in mouth ulcers. However, no matter how painful or difficult it was, Fergus, always made sure to eat, even right up to his last meal.
In October 1997, his first symptoms of Lung Fibrosis took the form of what appeared to be a persistent cold with a cough that he could not shake off. Later he developed severe mouth ulcers in his mouth and deep down in his throat. After various tests, he was eventually given the tentative diagnosis of Wegener's Granulomatosis, an auto-immune condition which attacks the lungs but since he did not have the classic symptoms of liver disorder, this was ruled out in the final analysis. He was prescribed with steroids and never came off these; although they were helpful in the beginning they most likely added to the scarring of the lungs. An additional side effect was the weakening of his bone density, which aggravated his AS problem, so to counteract this he had to take Didronel.
From 1998 he suffered from increased physical weakness and breathlessness. In October 2000 he bought himself an electric bicycle as by then he could not cycle uphill. After an operation to reflate a collapsed lung in July 2001, he remained on oxygen 24 hours a day and had to resort to use of a wheelchair but had not the strength to propel this himself. He returned home in September 2001 but he needed constant care. We were hopeful that he would receive a lung transplant at Newcastle-on-Tyne but unfortunately his case was turned down. In May 2002 he became much weaker and died very peacefully in the excellent care of the staff of St Vicent's Private Hospital on the first day that he received morphine.
The Irish Lung Fibrosis Association, founded by Dr Jim Egan, has been set up with the assistance friends of Fergus Goodbody, in recognition of the extraordinary courage shown by him in the face of his mortality.
Nicola Goodbody
January 2003
Pascal McSherry
Vivienne, Pascal's wife, tells of her, and her family's experience, of IPF.
Pascal was an engineer with a security firm; he loved life and lived it to the full. An avid football fan he was the life and soul of every party - the one who made sure everyone got up to dance. He belonged to the local fishing club, although as Vivienne says, "He was more into the social aspect of the club than into the actual fishing," and he was well-known too in the golf club.
Around Christmas time in 1999 Pascal went to his local doctor suffering from a bout of flu. As he was leaving the surgery he casually remarked to the doctor that he had been feeling a bit out of condition recently. He had particularly noticed that he was getting breathless when doing ordinary things, like going upstairs. He had no other symptoms but his GP decided to refer him to a respiratory consultant anyway.
The consultant did a variety of tests but nothing obvious showed up that could explain why Pascal felt so breathless. Meanwhile Pascal was getting on with his life and his work. He was, after all, in his mid-fifties so perhaps this was just a consequence of getting older.
Vivienne did not worry unduly about Pascal's breathlessness. He felt well and had no other symptoms or health problems. It was only when Vivienne and Pascal went on holidays with their friends in September 2000 that she realized there was something radically wrong. She was shocked at how "unfit" Pascal had become. "He could barely walk any distance without stopping to catch his breath. I just couldn't believe how bad he was."
When they got back to Dublin she insisted on accompanying Pascal on his next visit to the consultant, who readily admitted he was baffled by Pascal's symptoms. It was the consultant who suggested that they get a second opinion.
The second consultant eventually diagnosed Idiopathic Pulmonary Fibrosis (IPF) and Pascal was put on a course of steroids. Vivienne had never heard of this condition, but she knew that it was pretty serious when the consultant told her that Pascal would never again be the man he had been. Pascal was also diagnosed as having pulmonary hypertension.
By March 2001 Pascal was on oxygen twenty-four hours a day and he had to give up work. However, with his usual flair, he made the most of life on oxygen, continuing to attend football matches with his son, Ian, and regularly going for a couple of pints with his friends in the fishing club. "He was a bit embarrassed at first and used to leave the oxygen in the car when he went into the pub but he got over that," says Vivienne. His friends arranged an electric caddy car for him so he could get in the odd game of golf.
Vivienne has three daughters, Claire, Sonya and Helen and a son Ian. As a family they all tried to protect one another. "If I had a bad day and felt down I would wait until it was over before mentioning how I felt to mum," says Sonya.
Claire said she was glad she never knew more about her father's prognosis than he did himself although, as she works in a hospital setting, she probably could have found out more. "It would have created a difficulty for our relationship if I had more information than he had and I did not want that," she says.
Vivienne tried to keep family life as normal as possible and not let Pascal's illness overshadow everything but, by October 2001, when Pascal was admitted to hospital with yet another lung infection, they all began to acknowledge openly that Pascal was seriously ill. It was now obvious that his only chance of survival was a lung transplant.
As there was no lung transplant programme available in Ireland at this time Vivienne's first task was to try to persuade the doctors to send Pascal to Newcastle-upon-Tyne to be assessed for a transplant. "Because of the shortage of organs a strict protocol has to be followed in selecting which patients are put on the list," Vivienne explains. "It's not about how nice you are or whether the doctor likes you or not, it's just about who is most likely to do well after they have a transplant."
On a cold morning in early December Pascal was taken by air ambulance to Newcastle to undergo a rigorous battery of tests to see if he was a suitable candidate for a lung transplant. It was a tense time for Vivienne and her daughter, Claire, who traveled with Pascal to Newcastle. It was not until he was back in hospital in Dublin, and just two days before Christmas, that it was confirmed that Pascal had made it onto the active list for a lung transplant. Vivienne recalls the delight they all felt when Pascal got his bleep, "We were over the moon, and Pascal said that it was the best Christmas present he ever got."
Pascal insisted in spending a few hours at home with his family on Christmas Day and was able to hold his first grandson, Sonya's son, Joe, who had been born two weeks earlier, but it was obvious to everyone he was very ill.
Pascal died on the morning of the 28 December, just five days after he went on the transplant list. "But," as his daughter, Claire, says, "the good thing about it was he always had hope. He never lost that."
Tom Flynn
Tom is 54. He retired from the Garda Siochana in November 2002 after thirty years working with the force. When he retired he worked for a friend delivering furniture. This often involved getting up at 5.00am and working all day loading and unloading furniture. It was hard physical work but Tom was well able for it and never experienced any problems during the time he did this work.
In March 2005 Tom developed a chest infection that did not get any better despite treatment. He spent ten days in his local hospital and he says that overnight he went from being able to breathe normally to hardly being able to breathe at all.
He was taken by ambulance to the heart and Lung Unit in the Mater hospital where he met Dr. Jim Egan.
After a few days of tests Tom and his family were told that he needed a lung transplant. He could have gone to the Freeman Hospital in Newcastle but Tom opted to go on the list in Ireland even though no lung transplants had been done here at that stage. He says he had every confidence in the Mater team from the very beginning.
Shortly afterwards, in May 2005, the first lung transplant in Ireland was performed. Tom was just out of hospital when he heard the news and he says it gave him great hope.
At the beginning of September 2005 Tom got a call from the Mater to come in as there was a possibility of a lung for him. However, the transplant did not go ahead and, after spending a night in the hospital, Tom was sent home again. He had been warned by the transplant co-ordinator that this could happen so Tom was not unduly upset by this. In fact he says he was glad to have this practice run.
Just a week later, on the 11th of September 2005, he got another call from the transplant co-ordinator. Some of Tom’s former colleagues were part of the police escort that accompanied the ambulance from his home in Mountmellick to the Mater. This time the transplant went ahead and in a four hour operation Tom had his damaged right lung replaced by a new lung.
After spending three to four days in intensive care Tom was transferred to the Cardio-Thoracic High Dependency Unit. There he was taken off his oxygen and has not had to use it since then. While he was on the waiting list Tom had been on six litres of oxygen twenty-four hours a day.
Tom can now walk and cycle – on the anniversary of his transplant in September this year (2006) he cycled from his home in Mountmellick to the Mater to thank the transplant team for what they had done for him and to raise money for the Heart and Lung Transplant Unit. However, Tom does not feel he is fully back to himself yet but he is confident he will get there. He says that a combination of tablets, exercise and rest is important in getting back to full fitness. He finds keeping down his weight is a bit of a problem but as he says “there is a price to be paid for everything.”
Looking back now Tom thinks that the pulmonary fibrosis was affecting him long before he realised it. He recalls gasping for breath at times especially after strenuous exertion but put it down to all sorts of other things - getting older, being a bit overweight, and being unfit. He recalls feeling very tired at times “when you were out of energy you were just out of it completely and it took a long time to fill up again.”
He remembers cutting the hedge and having to do in stages over a week what he used to be able to do in a few hours.
As well as exercising and taking his daily medication to control rejection and prevent infection Tom returns to the Mater for a review every couple of months. He calls the heart and Lung Unit his home from home. Otherwise he is getting on with his life - grateful he has been given the opportunity to do so.