"The story of Liam from Ireland"

“I continued the work my wife started”

 

To show his wife how much he loved her and that he was still her husband besides a carer, Liam and Phyl renewed their wedding vows after 15 years. Just two months later Phil died, her husband, their three children and two granddaughters being near her. Soon after she died Liam continued the work his wife started.

 

Liam Gavin (49): “I met Phyl by chance at a music festival in Ireland. We were very happy with both working and sharing childcare and enjoying the adventure of great times together. Phyl had 11 brothers and sisters. One brother was diagnosed with IPF in 2009. They were unaware of the disease and were relieved it was not something serious like cancer. Unfortunately he passed away three years later in 2012 at the age of 58. Shortly after his funeral another sister was also diagnosed with IPF and passed away after three months.

 

Familiar IPF

During the time of the two funerals my wife was feeling fatigued and breathless and sadly diagnosed with IPF as well. Because of her brother and sister we were aware of IPF and ensured a early diagnosis by paying privately outside of the Irish Health Care system to see the Irish expert, a professor who at the time headed up the Irish Transplant programme. It was only by our knowledge of IPF that we received such a speedy diagnosis and by our spending money to obtain treatment and care not readily open to all in Ireland.

I filled my time with working to pay the medical bills and Phyl continued her work as normal as the  IPF only had minor impact on our life style and we made sure to make the most of this time.

 

Not telling the family

Our eldest daughter was due to marry in the summer of 2012. We did not tell the children till July 2012 to allow our daughter to get married without additional worry. Also we did not tell the rest of the family to now and worry especially after losing the two family members. During those months we only had each other to turn to. I felt very isolated during this time. So after the wedding we told the children and they were devastated. But we were as positive as possible and with Phyl on a new drug, still working and in good ‘health’ they were reassured. Only our youngest son was still at home and aged 14 at that time. It was to be hardest on him as the disease progressed slowly as Phyl would be anxious, or need him to help her in little things like fetching something from upstairs. This meant he became a carer too especially as I had to work extra hard. But he did not want to worry his sister or brother and he put a positive spin on things. Phyls friends also could not understand the disease and pulled away as Phyl had to refuse invitations or go home early. This meant her social circle diminished and this is common by IPF as it isolates the sufferer from the community, family and friends. This leads to loneliness, further anxiety and frustration. The children believed that Phyll could be with us a long time or till she got a transplant, they found this reality easier to deal with but Phyl and myself knew it was unlikely one but we chose to hope too.

 

"My wife saw herself as a burden"

My wife was very much a fighter, an independent career woman and a force of nature, I was always a strength and as a better cook than her I was very much a protector but this was also true prior to her illness so she was used to be being the domestic side of the couple. However in the latter stages she was very much distressed as she said “I was becoming my carer not my husband”. I was hurt by this as I loved her so much that to my mind I was just doing anything I could do to help. I realised after chatting that she saw herself as a burden, no longer my beautiful wild girl. I only saw my wife and mother of our children but this is hard to understand to someone who is slowly losing energy and I hope she understood when we renewed our vows that I meant them as I know she would have if it was me with IPF or any other illness or accident.

 

Five minutes to say goodbye

Roughly two years after diagnosis Phyl passed away on the 29th of January 2014. Finally she became hospitalised in the National Transplant Centre at the Mater Hospital Dublin. Despite her weakening she was still in good humour. But one day her organs began to fail and the doctors wanted to put a morphine mask to relieve pain at the end. We had five minutes to say goodbye. For my youngest son, who was 16 at that time, this was a terrible shock and he could not believe it as we had always shielded him despite his carer role from facing any negative view.

 

Loss of a loved one is difficult but the things that are important before their death remain equally important after their death, children and family being for me and my wife the most important thing as well as each other. After her death I concentrated on my children but also wanted the causes she had believed in to be continued and for me this was to try and improve the awareness and support of IPF.

 

Advice and friendships through ILFA

Phyl started campaigning on behalf of the Irish Lung Fibrosis Association for approved treatments to be reimbursed by the Irish Government. Also she was very grateful for the advice and friendships she made through ILFA and I saw it as a way to improve the life of patients. I had been helping the ILFA cause on this project by fundraising and prior to her death Phyl asked me to continue this work especially in light of the large family concerns. I saw my wife and other patient battle the Irish Health Care System as well as the disease and I was angry about this, so I saw ILFA as a stepping stone to improved care and conditions.

 

At this moment I am a director as well as Company Secretary of the ILFA. Also I am the General Secretary of the EU-IPFF. As I am working in the Social Sector with Autism an Challenging Behaviour, you can imagine this is a very busy life in which I also want to spend time on my hobbies like reading, Alpine Skiing and Cooking!

 

International campaigns for awareness

During the international meetings of the EU-IPFF where we meet the different countries of Europe we share  exchanging experiences, best practices, recourses from one country to the next and working together each September to ensure that global pulmonary fibrosis awareness Month makes a larger impact.

I feel the most important activity of the EU-IPFF is the bringing together all the different groups whether HCPs, Patient Groups, Industry or Larger NGO’s who have a interest in IPF, PF and Rare Diseases generally. This can increase awareness both of the disease and its unmet needs. A uniting of all the countries and stakeholders is the way forward in meeting the aims of the European IPF Patient Charter and helping those suffering from similar rare or common lung diseases. My hope for the next years is that the European Reference Network on Rare Respiratory Diseases reaches its full potential and the Centres of Excellence and Patient Groups from across Europe that make up its membership become properly recognised and funded. The EU-IPFF should join with others to lobby policymakers to support this and so I also feel this a major important activity that the EU-IPFF could do.

 

2000 steps programme worked

I was delighted to hear the Dutch Pulmonary Fibrosis Society would copy with the ILFA’s permission the 2000 steps programme in the International Pulmonary Fibrosis Week last year. This programme was designed by healthcare professionals in Ireland in 2014. My wife also followed this programme and found it good for both body and mind. I knew from Phyl and the ILFA support groups that it worked!

 

Seek advice

My advice to patients diagnosed with pulmonary fibrosis and their families is to seek advice, seek a support group or if you cannot attend keep in contact via online means. Hope is individual, every patient journey is different but hope is a good way to start, enjoy life, push yourself and accept help or seek it out when you can.”