The road of liver disease and transplant, both prior to and post transplantation, can be a long and difficult one. It’s filled with fear, uncertainty and a constant battle against disease progression and recurrence. Consequently, and following a request from St Vincents University Hospital, a group of post-transplant patients have come together to form a patient-led support group and we are delighted to introduce a new organisation called Liver Ireland Support Network (LISN).

April 20th marked the launch of Liver Ireland Support Network (LISN) which was held at the stunning Clayton Hotel in Ballsbridge. A total of 150 people signed up for the day, including consultants and nurses from St. Vincents University Hospital. From the start of the day the committee was excited and prepping to ensure the day went smoothly, banners were raised, flyers were placed, registry desk was set up and slides were finalised. The launch day was specially selected as it coincided with Organ Donor Awareness Week —a cause deeply personal to each member of our committee. All of us owe our lives to the selflessness of organ donors and their families.

While guests arrived and registered there was an opportunity to have tea, coffee and chats with other patients, family and friends. It was lovely to see so many people in high spirits and meet people in person, some of whom were on the same journey at the same time. The best way to describe the energy in the room was joyful and uplifting.

The main event kicked off at 11 am with Dr. Clive Curley, Chairman of LISN, welcoming everyone and providing opening remarks. Clive spoke about his own personal journey and the mission of LISN. He noted the need for an organisation like LISN and non medical support , this message resonated with so many in the room as there has not been something similar available before.

Clive welcomed Dr. Audrey Dillon, Consultant Hepatologist at St. Vincents University Hospital (SVUH) to the stage. Dr. Audrey Dillon spoke of liver disease in Ireland, her experience with the impact patient support groups have on the patients’ journey and also touched on measles. She reminded us all of the importance of vaccinations and for the family members of those we live with to be fully vaccinated. Dr. Dillon outlined her support and that of her colleagues to the LISN mission and the planned activities. She did suggest for some meet ups to encompass a healthy aspect such as walks and talks. Her passion for improving patient outcomes was evident throughout her talk. She addressed a question from the audience on vaccines; Dr. Dillon confirmed that those who are post transplant can’t have live vaccines.

Clive opened the floor to Prof. Anthony Staines, Professor of Health Systems at DCU and liver transplant recipient. Prof. Anthony Staines touched on his own experience of liver transplantation and provided an outline of liver health in Ireland and globally. At times there is a stigma around liver disease and this is something that is slowly changing.

The main take away that Prof. Anthony Staines left us with was to improve our wellbeing by exercising, drinking more water and eating more plant based food.

Ms Barbara Kilkenny was next to take the microphone. She spoke beautifully and honestly about her experience as a mother of a transplant recipient. Barbara shared the challenging journey she faced while her son was sick pre transplant, during the transplant and recovery. Barbara shed light on the feeling of needing to be strong for her son and family, but the internal struggle and the fear and feeling of overwhelm. She commented on the hope she has for LISN and the beginning of help and support to be there. There wasn’t a dry eye in the room at the end, and everyone gave her a standing ovation.

Dr. Zita Galvin thanked Barbara for her openness and confirmed that a psychologist has recently been hired by the hospital to be able to provide psychological support for patients and family who need it on the transplant journey.

Clive introduced Dr. Sharon Millen, a research fellow in Queens University, member of the Royal Victoria Hospital Liver Support Group and transplant recipient. Dr. Millen spoke about her personal transplant journey and the ups and downs she faced. Her personal experience led her to complete her research in the space of psychological well-being in liver transplant patients. She provided a brief summary of the findings of her research and outlined the multitude of emotional stages pre and post transplant (immediately after, 3 months post, 9 months post and 1 year post).

Dr. Millen spoke about the Royal Victoria Hospital Liver Support Group and her involvement with this group. She credited some of her ability to cope with the second transplant to the support she got from this group and is delighted to be part of a group that makes such a difference.

Clive introduced Noreen Murphy as the next speaker. Noreen is a LISN committee member and transplant recipient. Noreen gave an outline of her personal journey, which is quite different to most. Noreen required a super urgent transplant and was on the waiting list for 24 hours and woke up three weeks after surgery. Noreen’s story showed us that everyone has a different experience and it is never easy. After her transplant and the trauma she went through she was eager to speak and relate to people who had gone through similar,  but she couldn’t find anyone at the time. Eventually, she got together with Carol Ann and Judy to create a WhatsApp group of post-transplant patients which has helped people connect. There is no surprise that she is now part of the LISN committee and is one of the organisers of the events including virtual and in-person gatherings. Noreen outlined the event plans for LISN and pointed everyone to the website with the list of events.

Clive provided closing remarks and outlined the plans for the committee in 2024 and into 2025. He noted that we could not have done anything without the generous donations and support of our sponsors Inizio Health, Sharp Packaging, Advanz Pharma and Clayton Hotel Ballsbridge. It is an exciting time for LISN, liver patients and their families/ support network and we are energised to make a difference. Clive noted that there would be future collaborations with key partners such as Irish Liver Foundation, Irish Kidney Association and Royal Victoria Liver Support Group. He encouraged people to sign up to become members to keep up to date with upcoming events, support tools and information. Clive thanked everyone for their time and summarised, “LISN is a group that is bypatients for patients and with your help, we can make a real difference to all our lives and those of future generations to come.”

After the event, the Clayton provided delicious soup and sandwiches and a space for everyone to mingle and to share stories and updates.

It was wonderful to talk to so many people at different stages of recovery and the excitement of the future of LISN. So many people on the day expressed that they wished something like this was available when they were going through their transplant journey.