I was born with a rare condition – Congenitally Corrected Transposition of the Greater Arteries (CCTGA) with Pulmonary Stenosis and VSD. This condition accounts for only 1% of all heart disease and is a defect in which the heart’s lower half is reversed. Unfortunately my diagnosis at birth was simply a VSD and my parents were told not to worry as millions of people are born with holes in their hearts and they often don’t even need operating on!
I lived a fairly normal childhood and it was only when I got to the age of 8 that I couldn’t keep up with the other kids, I was blue, breathless and starting to struggle.
Aged 8 I remember vividly my consultant saying ‘it’s time to put a little patch on that hole of yours’. Even then the extent of my problems hadn’t been discovered.
After another eight hours of surgery, 16 in total, I was taken to intensive care. A priest had come from Liverpool Cathedral, he pinned a relic of Saint Padre Pio to me, gave me the blessing of the sick and asked for a miracle, as a miracle was all I had left according to my surgeon who waited with my family during the blessings. After my last rights, my family had a 24hr presence by my bed, they prayed, they told me stories and they brought cassette tapes from other family member telling jokes and stories.
Eventually my team decided I should try and have some time at home, I was still very unwell… but I didn’t care because my Mum and Dad promised I could get a dog!!
Since then I have had a further five open heart operations to replace every valve, one stroke, three pacemaker’s, one defibrillator and endocarditis four times.
I have never let CHD defeat me. I have traveled extensively and had a good life. I moved to Bristol, having met Myrock Jo through a mutual friend .
In January 2012, now living with heart failure, I was referred to the Freeman Hospital in Newcastle due to one of the leaflets of my prosthetic Tricuspid valve being stuck in the shut position. I really needed further surgery but it was considered too risky due to the number of operations I had already had. It was then I was told that the only option left was a heart transplant.
I was referred to The Freeman Hospital in Newcastle (330 miles from home). When we went for assessment I felt like a fraud, I never considered myself to be ‘sick’, this was just my life. Be being put on to the transplant list I felt like I was denying someone else the chance. It took the team to explain that without transplant Myboys would not have a Dad, to make me realise the gravity of my situation. The Doctor himself was surprised as it was only when they did the right heart catheter that he realised the state my heart was in. “I do not understand how you are physically able to do all the things you do, you certainly carry it very well, if it wasn’t for your attitude you would probably have been dead already”. It came as a shock but something of a relief too, I no longer had to hide how unwell I was, I now knew I wasn’t just being a wimp about it and more importantly I didn’t need to feel like this forever.
Explaining it to the boys was the hardest thing. I would like to recount a small part of that and I wish all grown-ups had this attitude.
I explained transplant avoiding the fact that someone had to die. I used recycling as my analogy. I get a heart that works, it goes in me etc., etc.. It was only a few days later when Josh came running into the bathroom with my phone ringing did it all sink in, “It might be the doctor with your new heart Dad”. It wasn’t, but it was a good time to chat. “Is there anything you want to ask me mate?” I said. “Actually I’ve been thinking. You are going to get a fixed heart put in you”, “Err yes…”, “Well… how did the first person who needed a heart get one?” (Talk about chicken and egg!). He thought diseased hearts got taken out, fixed, put on a shelf and when someone like me needed one, mine would be taken out and fixed and given to the next person. I then explained that someone needed to die.. As quick as a flash he said “Well that makes more sense, they don’t need it anymore”. If only everyone had the attitude of a six year old!
A year on, March 2013, I was in final stage heart failure. I was told that I may not live to see Christmas and that I needed to sort my business as much as I could, but more importantly spend some good family time together.
I was admitted to The Freeman hospital to wait for a heart. Being away from Myrock Jo and Myboys was the hardest thing of all.
Friday 3rd May I woke up in hospital after a disturbed nights sleep. I needed air so I asked if I could go for a walk, just out to the hospital garden.
As I left the ward I saw Mr Hassan, my surgeon, which I often did. “I’m on for the bank holiday Kevin so if anything happens you’ve got me”. We had a laugh and I walked out into the sunshine. I sat on a bench and had a nagging feeling. Something was telling me to go back to the ward. I ignored it and went for fish and chips in the Freeman canteen.
A constant ‘go back to the ward’ noise was in my head so I eventually did. I said to Emily my favorite nurse… “It’s going to happen today..”, she smiled and just said “Well I’d love to be the one to take you down pet, but I’ve not got anything to tell you I’m afraid”. I put my headphones on and closed my eyes.
Something was still nagging me. One hour later a coordinator in scrubs and Emily walked in. Emily couldn’t hide it, she was smiling from ear to ear and her eyes had tears welling up. “It’s happening isn’t it” I said. There was a potential match but I knew it was the one. I knew it with everything I had, I knew it from the moment the sunshine hit me outside and I was glad Mr Hassan was on…
Jo got to the hospital in record time from Bristol!
By the time the operation happened it was 1am and the date was May 4th. I was the calmest I had ever been. Padre Pio was with me, as the relic has been every time I’ve had any operation or procedures.
I got onto the operating table myself and I couldn’t help but say to the surgical team, “May the 4th be with you”.
Generally heart transplants take 7 hours. After 8 hours Jo was getting rather worried so she called the hospital only to be told they were struggling to get my heart out. As it happened my heart had started to grow around my sternum as it was so enlarged and covered in scar tissue. Jo was clearly very worried but they assured her it was all ok.
After 13 hours the job was done and Jo actually bumped into Mr Hassan as he left theater. This was now 24 hours after I had bumped into him.. How these surgeons do it I will never know. He reassured Jo that the heart was good but it was a very hard and difficult operation.
I always say to people with heart conditions it’s all about your head and your attitude. I’ve grown up knowing how to get better and get out of hospital. As soon as I came around I refused morphine and set about my plan to get out of there.
Four hours after transplant I was extubated and I was on facetime to Myboys. I was sat up eating just twelve hours after. Early signs showed the surgery had been successful.
I wanted to know about my donor immediately. I couldn’t stop thinking about him and his family, the loss, the pain, the hurt of losing someone. I later found out a little about him, his first name and that he died in a cycling accident.
Seven days after surgery I asked for an exercise bike. Still tubed, with a neck line in, I cycled seven minutes for the seven days since the transplant in honor of Mydonor Myhero. I vowed to keep doing so in his honour.
Nineteen weeks after my transplant I completed the 30 mile cyclosportive in memory of Mydonor (John) and to raise awareness for Organ Donation. I have his name in my helmet and every time I’m on my bike I think about him. When I’m tired I ask him for a bit extra and it spurs me on.
June 15th this year, I rode 54 miles from London to Brighton for Transplant Sport with 15 others.
My life has been blessed by having an amazing family. Jo has been an amazing Mum to our boys and has kept me on the right path using her well-practiced ‘tough love’ skills when needed. I would have been a mess without her, probably dead, and our extended family are always on-hand to look after Myboys when required. Without that support we would have been lost.
At the end of March 2015 we will be having our third child, another blessing of transplant, this is another life that will exist due to the selfless act of a family we have never met…. TeamMash+1.
I’ve had superb medical support from birth up to now. I want to raise awareness for children and parents of children with congenital heart disease, that it should not be something that rules your life. Life is about attitude and what you make of it, if you struggle to do something, don’t just stop trying to do it, just change HOW you do it.
We are in a position where one in three people die waiting for organ transplants in this country which is shocking. I was one of the lucky ones. Please join the Organ donation Register and tell your next of kin what you want to happen when you pass.. Organ donation saves lives, let that be your biggest legacy. Mydonor did and his family allowed it to happen. Not a day passes without me thanking them and thinking about them.
Please help and join in this ride, together we will make a difference, together we will save lives.