04 Feb Grahams Story
“As a teenager I grew up extremely sporty, was completely obsessed with football, always stayed active and loved the outdoors. I felt invincible.
This continued into early adulthood, until one night when I was out with friends at a local pub quiz and without any notice my heart started racing at an alarming rate and I felt really unwell, this continued into the next morning when I then decided to go to my local hospital.
When I arrived at the hospital my heart rate was 220bpm and the nurse instantly called for the crash team. Looking back, I now realise how lucky I was to even survive that night. My hospital stay lasted 6 weeks and they finally diagnosed me with ARVC (Arrhythmogenic right ventricular cardiomyopathy) and was fitted with an ICD pacemaker.
For the first 3 years everything was ok, and life carried on as normal. I just had to be careful how much I exercised.
The first time I realised I was really unwell was on holiday in 2007 in Spain. We had done a lot of walking that day and it was extremely hot. We stopped for food and I could feel my heart starting to race. I started to black out, then I felt the thump and pain of my ICD shocking me. I ended up in hospital in Spain for 3 days with very limited communication and understanding of my heart condition.
From this point on my life drastically changed, being shocked in such a public way, completely destroyed my confidence and made me extremely anxious. I couldn’t leave the house without having a severe panic attack. I became severely depressed and didn’t want to see anyone in case they had to witness me being shocked. In 2012 in the month of March I was shocked about 14 times inside 1 month. I was then admitted to hospital for my first ablation surgery, this along with a change in medication helped me to have a few years shock free.
This was amazing timing as in 2012 my son was born, and I was able to enjoy him growing up for the first few years without being shocked or being overly anxious. My life now had a new normal. I was able to return to work, I was given an opportunity to work with Michael, who is the owner of Accessoloo, which is a mobile high dependency changing places facility which allows people with disabilities to access changing bench, hoist and fully accessible bathroom facilities at events all around the North and South of Ireland. This work really helped build my confidence and helped to make me independent again and gave me a sense of purpose. I now class Michael as a close friend, not just my boss. He has helped me achieve things I thought I would never be able to do. I went to Buckingham Palace and the United Nations, both of which I will never forget.
Unfortunately, in 2018 the high heart rates returned and over a space of 2 weeks I was shocked around 10 times, 8 of these in 1 day when I was rushed to hospital in an ambulance, this was the beginning of a very long road. With 5 ablation surgeries inside a year and half and reoccurring low VT rhythms which persisted even after all the ablations and a lot medication changes. My cardiology team were amazing, and really tried everything they could to treat me.
Every day at this point I was struggling. I slept most of the day, being awake for maybe a few hours tops. I couldn’t walk from 1 room to the other without feeling breathless. Going for family days out, was a complete no go. And the teenager that once loved life and all things sporty was a distant memory.
In August 2020 It was decided that I needed to go for a heart transplant assessment, and at the beginning of October this became urgent as I started having severe heart failure symptoms. I was admitted again to hospital and was flown to the Freeman Hospital at the end of October for my assessment.
Before the assessment was even complete, I was told I would only have a couple of years to live if I didn’t get a heart transplant. I was immediately put on the urgent heart transplant list and had to remain in hospital until a heart became available. This was especially hard as this was all during covid. My family were in Northern Ireland and I was in Newcastle in England.
After a while I started receiving calls for possible donor matches. The 5th call was the gift I had been waiting for, it was off to theatre I went in the capable hands of the amazing transplant surgery team. I woke up after a couple of days feeling a little dazed and confused, and like I had been hit by a truck, but so thankful I had made it through surgery.
I knew from this point on, the hard work would begin and that I would have to do it not just for myself and my family but also for my donor family, to make the most of this amazing gift and new lease of life. As it turned out I missed out on spending Christmas at home with my family, but hopefully it will be worth it with many more to come and I was lucky enough that my wife got to visit me a few days before Christmas. Thankfully with technology I was able to videocall my son on Christmas morning and watch him opening presents that Santa had brought him.
After 6 weeks of recovery with the help and care from the amazing physio team, nurses and doctors, I went from not being able to walk from one room to the other, to post transplant being able to climb flights of stairs and even doing shuttle runs around the ward.
Last month I was able go home. I couldn’t wait to get cuddles from my son, enjoy my own bed, and simple things like take the dog for a walk.
Since I have been home, I have been keeping up with my daily exercise, I am looking to improve on my fitness as my goal now is to participate in Transplant Sports and the Transplant Games. This has been an incredible journey, and I never thought so soon after transplant I would feel so good, I wouldn’t have made it through the whole process of my illness and transplant if it wasn’t for my fantastic wife who goes above and beyond to support us as a family even through the toughest of times, I also couldn’t have got through it all without the support and love of my sister and family circle. I truly appreciate after being in and out of hospital for the last 16 years all that the NHS has done for me and continues to do for me. From my amazing cardiologist in Belfast, the staff in 5C and 5D in the Royal Victoria Hospital, to the transplant team and nurses in wards 24 and 38 at the Freeman hospital in Newcastle.
I can now look forward to living life to the fullest and making memories with family and friends, while every step of the way being grateful to my donor and donor family, I truly can’t put into words how thankful I am for the amazing gift I received. I have been given the gift of life. Please share your wishes about your organ donation decisions with your family. You could be saving multiple lives.”