Double Lung Transplant

Double Lung Transplant


  • Happy 26th (Transplant) Anniversary to Brendan McLoughlin from Ballybofey, County Donegal. The longest living CF lung transplant recipient in Ireland.

    Brendan Mcloughlin (PWCF) celebrates the 26th anniversary of his lung transplant on the 11th of August 2018. Brendan is currently in the very good care of the Mater Hospital in Dublin. He was originally transplanted in Newcastle, England on the 11th of August, 1992.

    Brendan was given a single lung transplant in 1992, which is still quite unusual for patients with CF. Brendan recalls ‘they took two lungs out and put one back!’. He remembers ‘before the operation I was gasping, struggling for health.. I couldn’t lie flat- there had to be six pillows supporting me. Afterwards everything had completely changed. It was like a new life’ 

    The transplant was very successful and until the last year or so, Brendan was living independently. 

    Brendan also needed a kidney transplant which was successfully performed in Dublin in 2002. Brendan is one of the longest surviving lung transplant recipients in the world. The world record for a single lung transplant is held by an Irish great grandmother, Vera Dwyer who has a different condition (Fibrosing alveolitis) and was transplanted in the UK in 1988. In 2017, Vera was verified by the Guinness book of records as the the longest living single lung transplant recipient in the world (29 years).

    Brendan has long campaigned for the rights of people with disabilities and in recognition of his work, earlier this year Philip Watt, CEO of CFI presented Brendan with a copy of an Irish Time article from 1992 that featured his lung transplant.

    On behalf of all of us in CFI, we wish our friend Brendan happy anniversary!

  • Double Lung Transplant for CF Advocate Orla Tinsley

    Cystic Fibrosis Ireland sends our love and best wishes to the wonderful CF Advocate Orla Tinsley who we understand has been called for a double lung transplant in New York Presbyterian Hospital. 

    After several months on the transplant list and six calls, hopefully this will prove 'lucky number seven' for Orla.

    On behalf of CFI and the CF Community in Ireland we wish Orla success with her transplant, our thoughts are with her and her family at this time.

    Philip Watt
    CEO
    Cystic Fibrosis Ireland 

     

  •  

    Good news on Organ Donor Consent 

    21 January 2019

    The Irish Government has indicated its intention to bring forward to the Cabinet 'soft opt out' organ donor consent next month (February 2019) as part of the Human Tissue Bill.

    This is strongly welcomed by Cystic Fibrosis Ireland, which is part of 7 patient groups in the Irish Donor Network (IDN) that supports the change in donor consent from opt in to soft opt out. We believe this change will result in more solid organs for transplantation (heart, lung, kidney, pancreas and liver).

    Under the proposed change, it will be presumed that most people in Ireland want to donate their organs (this is supported by opinion polls) and there will be an online Register for those that want to opt out.

    Next-of-Kin will still be consulted under the new system. This why it is called ’soft’ opt out.

    A hard opt out is where Next-of-Kin are not consulted. Understandably the ‘hard’ opt out system is not proposed for Ireland for ethical and practical purposes.

    Cystic Fibrosis Ireland urge our members to make their views known during this debate, especially those families that have benefited from a double lung transplant. 

     

    For further updates, visit the website of the Irish Donor Network (IDN) http://donornetwork.ie

    See the letter from CFI/IDN published in the Irish Times https://www.irishtimes.com/opinion/letters/organ-donation-and-transplants-1.3764244 or

     

     

  • Cystic Fibrosis Ireland-funded research to study the effect of exercise in the management of patients with cystic fibrosis undergoing lung transplantation

    Patient-centered research will examine the role of exercise in the management of patients with mild, moderate and severe cystic fibrosis

    With 65 Roses Day upon us, Cystic Fibrosis Ireland today announced an exciting new initiative within MedEx, the chronic illness rehabilitation programmerun by Dr. Noel McCaffrey in Dublin City University (DCU), following the recommendation of the Head of the Mater Lung Transplant Unit, Professor Karen Redmond.   This will be co-funded by the Mater Foundation with funds raised by family and friends of the late Becky Jones.    

    We are delighted to announce that Nicola Hurley has been selected for a four year PhD to carry out pioneering research into the role of exercise and its effects on physical fitness, muscle strength, bone health and quality of life in patients with cystic fibrosis (PWCF). 

    In Ireland, 1 in 10,000 people live with CF, while 1 in 19 people carry the altered CFTR gene. Current treatment options for people with CF include drugs, physiotherapy, nutritional advice, exercise and subsequent lung transplantation.

    High levels of cardiovascular fitness increase the lifespan of PWCF. Regardless of disease severity, an association between cardiovascular fitness and survival has been shown in both children and adults with CF. Participation in regular exercise also has the potential to slow the annual rate of decline in lung function, maintain or increase bone mineral density and increase health-related quality of life in PWCF.

    Nicola’s research will be carried out in the School of Health and Human Performance at DCU, in collaboration with the Mater Misericordiae University Hospital, Beaumont Hospital and St. Vincent’s University Hospital, Dublin. Nicola’s research will aim to develop an optimal exercise training program that incorporates both supervised and home-based elements. 

    Describing the research, Nicola said:

    “Although the message of ‘exercise is medicine’ is not new, the challenge to increase the use of exercise as a clinical management tool for PWCF still remains. This research grant will allow me to conduct high-quality, evidence-based work that will inform patient-care pathways with regard to the role of exercise in the management of CF, particularly in patients scheduled for lung transplant. I hope that the outcome of this research can positively impact the quality of life of patients living with CF and improve transplant outcomes. I am very excited to get started!”

    Professor Niall Moyna, supervisor of Nicola’s research and Head of the School of Health and Human Performance and a member of the Centre for Preventive Medicine, both located at DCU, added:

    “This is an exciting research opportunity for Nicola and Cystic Fibrosis Ireland. Exercise has an important role to play in the management of CF, particularly for patients scheduled for lung transplantation. This research will give Nicola the opportunity to enhance the patient care pathway and improve patients’ overall health related quality of life and post-transplant outcomes. I am looking forward to working with Nicola on this research”.

    Professor Karen Redmond, Consultant Thoracic and Lung Transplant Surgeon at the Mater Misericordiae Hospital, Dublin, another supervisor of Nicola’s research, added:

    Developing easily accessible state of the art exercise programmes that incorporates newer technology and practice methods will enhance quality of life and hopefully outcomes”.

    Philip Watt, CEO of Cystic Fibrosis Ireland, co-funder of Nicola’s research, added:

    CFI is proud to be one of the funding partners and to provide the funding for this very important research project. The importance of exercise in CF care is crucial, but to date there has been a limited focus on research on pre and post transplant patients with CF. We are confident that the outcomes of this study will help us understand the challenges but will also provide some of the practical tools which will help our patients”.

    Aisling Jones, mother of Becky Jones, said:

    We are delighted to be supporting this very important initiative and see great possibilities for CF patients as a consequence of the work that Nicola and the team at DCU will undertake.  Ireland has a long way to go in comparison with other countries worldwide, in optimising exercise and physical activity as therapeutic interventions and we see this as the first step towards creating a world class programme that will deliver great benefits to the CF population”.

    Dr. Noel McCaffrey, director of MedEx Wellness at DCU, added:

    “A large proportion of the disability, unwellness and poor quality of life in many chronic illnesses, including CF, is actually caused by physical deconditioning, which itself is due to becoming inactive. This progressive inactivity is very damaging because, in addition to leading to poor levels of physical function, it is also associated with poor psychological wellness and social isolation. There are particular challenges with designing and implementing an exercise intervention for CF patients, especially in a group environment like MedEx, and solving these challenges will be an important part of Nicola’s research. Our hope is that the output of the research in due course will be of practical benefit to CF patients”.

    ENDS


    What is cystic fibrosis (CF)?
    CF is Ireland’s most common life-threatening inherited disease. CF is a genetic disorder.Approximately 1 in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance of a child being born with it. CF affects the regulation of absorption and secretion of salt and water in various parts of the body including the lungs, sweat glands, pancreas, and gastrointestinal tracts. This defect inhibits the flow of salt and water through the body’s cells, causing a build-up of thick, sticky mucus, which can clog airways and harbour harmful bacteria. Symptoms reported by people with CF vary significantly in severity from mild to debilitating. The most common symptom is recurrent chest infection, which results in lung damage, with the majority of deaths occurring through respiratory failure. There is a high prevalence of CF in Europe, with the highest prevalence in Ireland, which is almost three times the average rate in other EU countries and the United States.

    About Cystic Fibrosis Ireland
    Cystic Fibrosis Ireland, established by parents in 1963, is a leading national organisation dedicated to improving the quality of life of people with CF and their families across Ireland. It does this through providing information and education, advice and advocacy to people and their families, offering grant assistance, undertaking research, funding state-of-the-art dedicated CF health facilities and CF clinical staff, and advancing the development of lung transplantation in Ireland.

    About MedEx Wellness

    MedEx Wellness is a novel community-based chronic illness rehabilitation programme located at Dublin City University. It offers medically supervised exercise classes and educational workshops to patients with a range of chronic illnesses. Currently, programmes are provided for patients with cardiovascular disease, pulmonary disease, diabetes, and cancer. MedEx also encourages peer support through social activities after class. Since its establishment in 2006, MedEx has grown exponentially to become one of the largest centres of its kind in Europe. The programme, led by Dr Noel McCaffrey, has gained the confidence of local GPs and hospital physicians and has a strong and steady referral base. Currently, MedEx hosts over 600 patient visits per week. It has become a significant resource to the surrounding community and truly transforms the lives of individuals (and their families) living with the burden of chronic illness.

    MedEx offers the following classes:

    ·        HeartSmart - a cardiac rehabilitation programme.

    ·         BreatheSmart - a pulmonary rehabilitation programme.

    ·         SmartSteps - a vascular rehabilitation programme.

    ·         Diabetes Health Steps - a programme for people with diabetes.

    ·         Move On - a 12 week programme for people recovering from cancer treatment.

    ·         Movement To Music - a 12 week dance class for individuals with Parkinson’s.

    ·         Cancer Prepare – exercise programme for patients who are preparing for cancer surgery or treatment.

     For information or queries regarding the MedEx programmes please contact DCU Sport Complex on 01 700 5797.