Jim's Story
“The one positive fact that stood out to me when I was transplant listed was that one person, as an organ donor, can save or enhance up to nine lives, whether that be through organ, tissues or skin graft donation. This statement often gets lost amongst the varied emotion associated with organ donation, and understandably so. Therefore, I decided to name my campaign Save9Lives which almost acts as its slogan as well. From the vibrant logo colours, all the way through to the events it appears at, the whole thing is meant to touch upon the positive outcomes that come from organ donation, from a recipient’s point of view.”
- Jim Lynskey
Just after birth, Jim and his twin sister - Grace - contracted viral meningitis, which led to the enlargement and weakening of Jim’s heart - a condition known as dilated cardiomyopathy which often leads to heart transplantation. Jim’s family were advised that a transplant would one day be necessary for him.
At the age of eight, Jim suffered consecutive cardiac arrests which led to the insertion of an implantable cardioverter-defibrilator (ICD). He also received ablation treatment to help control his abnormal heart rhythms.
JL: “I was eight when I suddenly began to experience something called VT, which is a very fast, irregular heart beat, often leading to a cardiac arrest which was the case here. I owe everything to my GP, whose quick action and understanding of the situation certainly saved me.”
At the age of 17 Jim’s heart arrested again.
“This arrest came almost out of nowhere at a time when things were really developing for me, academically and socially. I was in the sixth form at school with many ambitions and a lot of excitement about my future. Then the arrest happened and every day after was clouded by fear, but I tried to make a positive difference where I could. Fabrice Muamba was particularly good to me: a Premier League footballer who had also recently suffered from a near cardiac death from an almost identical circumstance.”
By the time he was 19, Jim’s heart had begun to fail significantly after a pneumonia infection attacked his heart. As a result, his major organs were deteriorating at a frightening rate.
It was decided that a Left Ventricle Assisted Device (LVAD) was Jim’s only hope of survival, with his tiring organs unable to accommodate a transplanted human heart.
JL: "I was told at the time my LVAD was implanted that the average wait for a heart was three years. I was so poorly at this stage that I was ready to grasp at any option to help me survive. However, I was warned that the pump would create challenges to my quality of life. I now live on batteries that last a maximum of eight hours. I cannot take a bath and I have to adapt my clothing to accommodate the bulky equipment I must carry with me at all times. Being diagnosed with heart failure is shocking, but I didn’t want to let it take over my life completely. I wanted to try and help myself and others in any way I could, so I began reading up about organ donation and transplant statistics. The results were extremely sobering: three people die each day due to the lack of available organs, and there is an estimated three-year wait for patients in my position. It was during my research that I first came across the fact that one donor can save nine lives. It stayed with me and eventually I turned it into this campaign. I also decided to apply for university, and got into Harper Adams in September of 2015. The “I have no pulse” line during Freshers’ introduction was, I think, a Harper Adams first…”
Jim Lynskey with Left Ventricular Assisted Device.
In 2017, Jim moved university to Sheffield Hallam. It was, by now, near the end of his expected three-year wait for a new heart. However, on October 10 that year, his LVAD faulted. This was extremely rare; it had never happened in the UK before and it meant that his pump had to be changed as an emergency. The surgery was unexpectedly complicated; it took almost thirteen hours and he was put into an induced coma, overlapping his 22nd birthday that lasted for ten days.
JL: “October 2017 really was gutting. There are times when my health issues have some logic and I can tell myself that everything will be okay but this time it really stumped me. I was at university when the pump’s alarm began going off. It really freaked me out. I knew I had to get to Queen Elizabeth’s in Birmingham from Sheffield, fast.
“The replacement decision was taken almost immediately. There was no new heart available so this was the only course open to us. The recovery and mental strength to get up from this set back is still a challenge, but I am more determined than EVER to drive this frustrated energy into Save9Lives and to bring the importance of organ donation into the mainstream."
Jim’s legacy…
We are devastated to let you know that our beautiful boy, Jim Lynskey, the founder of Save9Lives, passed away on May 13, 2019.
Jim was undergoing a procedure to help with the pain caused by his LVAD heart pump, which had some complications. He was still on the waiting list for a heart transplant.
Jim's LVAD was always seen as a bridge to transplant when it was fitted in 2015. Unfortunately the shortage of hearts in the UK meant he never had the chance to get a new life off batteries.
Many of Jim's organs failed during his deterioration, but we hope that Jim was able to benefit another person in need with the donation of his tissues and corneas.
We know the sadness and pain this will bring to his family, friends, and even the people he only met for just a brief time through his work with this campaign, which Jim started all by himself after his first pump fitting. Now all of our hearts are broken.
We fully intend to continue the incredible work of Save9Lives, sharing the important message of organ donation and working with as many people as possible to keep Jim’s legacy alive.
We love to be able to collaborate with others in order to promote the message of organ donation, and any support that you are willing to give us will be so gratefully received. If you would like to support the Save9Lives campaign, you can do so with any of the buttons below.
