Ecumenical Service of Prayer and Reflection
Breda Coughlan’s story began in the spring of 2019 when she was on holiday in Rosscarberry Co. Cork. Breda had always enjoyed walking, but on this day she struggled to walk up an incline that wouldn’t have been difficult for her in the past. Upon returning home, she visited her GP who referred her to a cardiologist for an angiogram. The test came back normal and so no diagnosis was made, but Breda still struggled to catch her breath. She went back to her GP and was treated for fluid on the lungs. She was also sent for an x-ray and after a spot was found on her lungs, Breda was referred to Beaumont Hospital where a pulmonary test and CT scan diagnosed Idiopathic Pulmonary Fibrosis (IPF).
Not realising the severity of the condition, Breda was initially relieved on hearing this diagnosis because it wasn’t cancer. But when she realised that IPF is progressive and, without a lung transplant, incurable, Breda was filled with dread. This is when her family began to rally around her. Her daughters attended a Patient Information Day hosted by the Irish Lung Fibrosis Association (ILFA) which gave them insights into her diagnosis. They brought home information leaflets for her from the event about the condition but it was a month before Breda could bear to look at them.
As she began to come to terms with her condition, Breda realised that this was fight between her and IPF, and she wanted to win. She registered for ILFA’s ongoing rehabilitation exercise classes and yoga classes to help her maintain her fitness, and she participated in “Sing Strong” and seated dancing classes. All of this physical activity helped Breda maintain her lung function and she began to see small improvements in her condition. Encouraged by this, her family, a massive source of support, organised a personal trainer to come to her house once a week with an exercise program to improve her fitness and lung function.
According to Breda, “I am probably fitter now then I have ever been!!! ILFA’s Dublin support group meetings where you can talk to fellow patients and ask how they are coping and get advice is a wonderful resource as well.”
Breda is delighted that she can still travel for important events. “My condition did not stop me visiting my son and family in Los Angeles. When we visited them in 2023, we celebrated our 51st wedding anniversary where my son and his family took us to Las Vegas to the Little White Chapel to renew our wedding vows. Elvis walked me down the aisle and performed the ceremony. It was a lovely day enjoyed by all especially our grandchildren.”
Since December 2023 Breda has been on anti-fibrotic medication and her condition continues to remain relatively stable. While she has experienced some side effects, they have not prevented Breda from continuing to live life on her terms. She’s a fighter and her family fights with her, firmly in her corner as she battles IPF every day.
September is lung fibrosis awareness month and ILFA is raising disease awareness and championing the cause of patients and the lung fibrosis community. For more information, contact us at info@ilfa.ie or 086 8715264.
Denise Campbell and her husband Charlie, a farmer and father of three, have been living with lung fibrosis since he was first diagnosed in 2023. The dry cough began in Jan 2022 following a positive COVID test and by April 2022 the cough was incessant. After several months of cough and breathlessness just performing his daily duties, Charlie attended the Emergency Department at University Hospital Galway where a CT scan highlighted a problem, but a diagnosis was not made.
The next 12 months were an extremely stressful time as Charlie and Denise searched for a diagnosis. No one seemed to have any answers to Charlie’s increasingly serious health condition. In April 2023, out of sheer desperation, Denise telephoned the Irish Lung Fibrosis Association (ILFA). The wealth of information they received was life changing, including signposting to the Respiratory Medical Centre at University Hospital Galway. From that point forward Charlie received excellent and expert care for his condition including from his medical team and respiratory nurses. This care made a huge difference in their lives.
Charlie was immediately diagnosed with fibrotic organizing pneumonia, a type of interstitial lung disease (ILD). He found he needed supplemental oxygen and would have limited mobility. Despite this overwhelming situation, Charlie continued to work the farm with fantastic support from family and friends. He hoped his ability to work would be enhanced by attending pulmonary physiotherapy. Although the waiting list was long, Charlie was able to attend an 8-week class which improved his physical strength and wellbeing. Unfortunately, after that class Denise and Charlie found they had exhausted the available services for lung fibrosis patients. They learned they were not eligible for physiotherapy classes, mental health or financial supports.
“The point I want to make to the Irish Government” Denise Campbell said, “is that if you know where to look, we have excellent services and professionals working in lung health. They have saved Charlie’s life. We MUST continue to ensure that these services are fully supported in every possible way and that they are developed and enhanced as soon as possible. We struggled for more than a year to get a diagnosis and reach supporting services.”
Denise went on to say, “Much more needs to be done to ensure that every patient in Ireland who needs respiratory services can reach them. We fully support ILFA’s pre-budget submission to the Irish Government, and appeal to our elected representatives to do what they can to achieve these life changing requests. “
The only “cure” for lung fibrosis is a lung transplant and recently Charlie received just that from the Heart and Lung Transplant Centre at the Mater Hospital. It’s a breath of new life for Charlie and as he recovers, he looks forward to getting back to the life he knew before lung fibrosis cast its dark shadow over his family.
Maureen O’Donnell, CEO of the Irish Lung Fibrosis Association, said “we are absolutely delighted for Charlie and his family. He has been so brave, and now the lung transplant will give him a new lease on life.
While Charlie’s story is truly inspirational, it is also unfortunately, rare. Lung fibrosis patients in Ireland face a battle on two fronts – against the progression of their disease and against a healthcare ‘system’ that isn’t fit for purpose. Diagnosis is often delayed; patients are excluded from necessary medical services; some travel great distances to receive proper care; and patients can literally slip into poverty because of high healthcare costs. It’s unnecessary and unacceptable.”
September is lung fibrosis awareness month and ILFA is raising disease awareness and championing the cause of patients and the lung fibrosis community.
For more information, contact us at info@ilfa.ie or 086 8715264.
When: 18 September 2024 at 3:00 pm
Where: Online
Staying active is one of the most important things lung fibrosis patients can do to maintain their physical and mental wellbeing. There are numerous studies which show exercise can significantly improve lung function and cardiopulmonary endurance for patients. It can also help with maintaining weight, improving energy, reducing stress and improving sleep. But exercise can be challenging, particularly if you feel breathless. This Let’s Talk session with ILFA’s expert exercise instructor Eimear Bell, will help participants to better understand the role exercise plays in disease management, provide tips for incorporating exercise into everyday activities, and a few breathing techniques that can support exercise and reduce anxiety.
Click here to register or go to: https://events.teams.microsoft.com/event/399c3e9b-d5ea-4414-aa9f-85cf5378b2c6@a269f87c-f8e5-4dd4-9341-aef9beeb799e
Lung Fibrosis Is a Battle
Every day, approximately three people in Ireland get diagnosed with lung fibrosis, a progressive and life limiting disease. Patients may have a dry cough for a while but may think nothing of it. Then perhaps after a few months of feeling breathlessness and fatigue along with the cough, they go to their doctor. Because idiopathic pulmonary fibrosis (IPF – the most common form of lung fibrosis) is a disease of exclusion, which means a diagnosis that is given after all others have been ruled out, diagnosis can sometimes take more than a year.
Once diagnosed, lung fibrosis patients in Ireland face a battle on two fronts – against the progression of their disease and against a healthcare ‘system’ that isn’t fit for purpose. Because the disease is complex, many are excluded from basic supports offered to patients with other diseases like pulmonary rehabilitation and access to specialty care close to home. As a result, patients are forced to travel sometimes great distances to receive the care they need.
Patients may also find that lung fibrosis is an expensive disease to manage as they are forced to bear the upfront burden of supplemental oxygen costs. At present, the HSE only reimburses after the expense is incurred, which can be more than 500 euros per month in some cases. There are also the increased electricity costs and travel costs that aren’t reimbursed. Many patients are unable to work and so the additional costs can be unmanageable for those on a limited budget.
We Fight Every Day
Originally founded in 2002, the Irish Lung Fibrosis Association (ILFA) has been fighting on behalf of patients for more than 20 years. ILFA is a patient-centred organisation. We regularly engage with the HSE, the medical community and other partners to educate and advocate on behalf of our members. Over the last several years, we’ve been working with the Government to increase access to services and in 2024 in particular, we’ve requested the Government provide grants and offsets for the high costs of managing the disease. We also provide supportive services directly to our members like patient information days, let’s talk sessions, exercise and other wellbeing classes.
Join the Fight
September is lung fibrosis awareness month. ILFA is working during the month in a variety of ways to raise disease awareness and to champion the cause of patients and the lung fibrosis community. Throughout September we will be featuring several member stories that demonstrate the strength and resilience of our community. Look for additional information on our website and social media pages.
If you or your loved one have been diagnosed with lung fibrosis, then you’re fighting too, but you don’t have to fight this battle alone. Join our community and we can provide help and support. For more information, contact us at info@ilfa.ie or 086 8715264.
Irish Lung Fibrosis Association
Registered charity number 20053437
Company registration number 367940
Charitable exemption number CHY 15462
ILFA developed the 2000 Steps a Day Challenge more than a decade ago based on an idea by Ms. Irene Byrne, Senior Physiotherapist with the Heart and Lung Transplant Unit at the Mater University Hospital Dublin. It is a simple concept suited to patients of all exercise levels. It can be used by those with mild or limited disease who are active and able to engage in exercise and those with more advanced disease who may be struggling with reduced physical ability.
Patients begin the programme by recording their step count for a few days using their pedometer and then aim to add an extra 2000 steps a day to reach a new baseline over the following days or weeks depending on their ability. 2000 steps reflect the average number of steps required to walk one mile. Research has shown multiple health benefits associated with 2000 steps per day and greater effects with more steps.
With the 2000 Steps More initiative helping to improve health outcomes for over a decade, ILFA realised it was time to review the efficacy of the programme. Our thanks to Dr Roisin Cahalan for conducting this review for ILFA, and to the Irish Research Council, who funded the work.
Read the report: Report 2000 steps_FINAL
Contact us to learn more about the 2,000 Steps and other ILFA programmes.
Lung fibrosis is a chronic, progressive, and life-limiting disease that results in severe shortness of breath, relentless cough, low oxygen levels, and extreme fatigue. ILFA estimates that approximately 1 in 1,600 people over the age of 65 in Ireland die from the disease each year.
For more than 20 years, the Irish Lung Fibrosis Association (ILFA) has provided education, advocacy and direct supports to patients and the wider lung fibrosis community. Despite our work over the years, today many patients are forced to fight a battle on two fronts – against the progression of their disease, and against an inequitable ‘healthcare system’ that denies them access to the care they need.
Equitable healthcare for lung fibrosis patients can only be realised through the establishment of a Clinical Care Programme. While we work toward this ultimate goal, we have interim priorities that if properly funded by the Irish Government, will go a long way in supporting lung fibrosis patients.
Today, in our 2025 pre-budget submission, ILFA is calling on the Government to fund a patient registry, to resource the development of a Clinical Care Pathway and to expand pulmonary rehabilitation access to include lung fibrosis patients. We’re also seeking the establishment of a tax rebate programme to ensure patients who depend on oxygen are not denied their fundamental human right to breathe.
Commenting on the submission, ILFA’s CEO, Maureen O’Donnell says: “It’s no secret Sláintecare is struggling to realise its vision of equitable healthcare for all. Ireland spends just 6.1% of GDP on healthcare, we’re in the bottom 15% of OECD countries. We see the result of underinvestment every day in waiting lists and trolley counts. For lung fibrosis patients, systemic underinvestment means many are denied basic, adequate care. As we look ahead to 2025 though we have an opportunity to invest in sensible changes that will make a big difference. This is all we ask for – that lung fibrosis patients get the care they need to help them manage their condition.”
Read ILFA’s Pre Budget Submission FINAL
with Lindsay Browne, Respiratory Advanced Nurse Practitioner, St. Vincent’s University Hospital will take place online on 14th August at 3:00 pm.The online event will take place on Tuesday 16 July at 2pm.
