Jim's Story

 

“The one positive fact that stood out to me when I was transplant listed was that 1 person, as an organ donor, can save or enhance up to 9 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 it's 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

 
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Jim Lynskey lives with a case like no other in the UK.  Just after birth, he and his twin sister - Grace - contracted viral meningitis, which led to the enlargement and weakening of Jim’s heart.  His condition is known as Dilated Cardiomyopathy: a condition 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 8, 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 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 3 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 8 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: 3 people die each day due to lack of organs, and there is an estimated 3 year wait for patients in my position.  It was during my research that I first came across the fact that 1 donor can save 9 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.

Jim Lynskey with Left Ventricular Assisted Device.

In 2017, Jim moved university to Sheffield Hallam. It was, by now, near his expected 3-year wait for a new heart.  However, On October 10th 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, 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."