The gift of life

This year is the 45th anniversary of the first human heart transplant. Sarah Brealey meets Kevin May, whose experience has spurred him to campaign for more organ donors.

On the day I meet Kevin May, he had walked the half-mile or so from his home to the station in 15 minutes. Nothing remarkable, you might think, but for him, it’s another milestone in his recovery. The last time he did that walk, his heart failure meant he did it with great difficulty and it took him 45 minutes.

Kevin, who grew up in South Africa but moved to Kent when he was 14, was always sport-mad and a keen rugby player. His heart problems began at 37 when he was diagnosed with atrial fibrillation, a type of disturbance to the heart rhythm. Two years later, he suffered a stroke, and then in July 2010, the day before his 50th birthday, he was diagnosed with heart failure.

His condition meant he couldn’t work or enjoy normal family life with his wife, Julie, and children Victoria and Michael. And, as it got worse, even walking 50 yards was impossible. As he puts it: “Life became a chore. Because of the fluid retention, I looked like I was pregnant. My legs were so swollen I couldn’t get my trousers on.”

He says the effect on his family life was even harder than the physical symptoms. “It was a very emotional time. One of the worst things was being in hospital for my son’s 18th birthday. It’s a big thing to take your son for his first drink in a pub and I couldn’t do that.”

When it dawned on him last summer that he might die, he made a difficult trip to a jeweller to buy gifts for his wife and children, in case he wasn’t around at Christmas. “I wanted to get the jewellery engraved but I wasn’t sure what it should say, because I didn’t know whether I would be there or not. That was the hardest part.”

 

Watch Kevin May and his wife Julie describe how his life was transformed, thanks to a heart transplant (You may need to log into Heart Matters first)

 

 

 

 

A new heart

“It got scary last August when I was told I had a year to live unless I got a new heart,” he says. “As time goes on, you feel like your life is ticking away. I used to wake up every morning and think, is today the day that I’ll get a new heart? It was hard to stay positive and realistic.”

I would say to anyone, whether it’s your first heart or your second, look after it

His condition deteriorated more quickly than expected, meaning that soon he was fighting for his life and in intensive care for six weeks. “At one point, my family was told I had two days to live, but I managed to pull through.”

He was placed on the priority list of patients who are in most urgent need of a new heart and, luckily, a suitable one became available within weeks. “When they told me that a heart had come in, but they still had to do some checks to make sure it was suitable, those were the longest hours of my life. I was lying there trying not to get too excited.”

He left hospital a month after the transplant, although he suffered a setback when his body started to reject the heart.

Rejection was, and still is, Kevin’s biggest fear, but an intensive course of steroid treatment kept him on track. He says: “I was back in hospital again. It was pretty horrible – the steroids make you swell up and everything tasted of tin, but it was better than the alternative.”

A changed view of life

Because the drugs Kevin takes to avoid rejection suppress his immune system, he has to be careful to steer clear of any infections. He takes 17 tablets a day, though, having taken heart tablets for many years, he has got used to his new five-times-a-day routine. He says: “It’s like breathing, in that I don’t really have an option not to do it.”

Since his transplant, he has changed his lifestyle. He now has a better diet and does more exercise, including walking, jogging, swimming and going to the gym. Having built up his health gradually, he is now planning to return to rugby and to compete in the British Transplant Games in August.

“This whole thing has changed my view of life. I would say to anyone, whether it’s your first heart or
your second, look after it. My getting a new heart has changed my life, and I realise that there are many other people who have had to wait longer than I did for a new heart. So I feel massively fortunate and I feel a responsibility to look after my heart.”

I take pleasure in all the silly things, the things you take for granted

It’s not all responsibility, though. Kevin says he feels a daily sense of joy. “I take pleasure in all the silly things, the things you take for granted.”

Now he is passionate about encouraging people to sign the Organ Donor Register, so that more lives can be saved. He says: “It could happen to you, or to someone you know. You probably think that could never happen, but it could – a year ago I never thought I would be on the transplant list.”

Kevin believes that the death of his nephew, Rob Knox, in 2008 gave him the fighting spirit he needed to get through his illness. Rob, a talented actor, was just 18 when he was stabbed to death outside a bar in Sidcup, while defending his brother. “I saw personally what death can do to a family. Three or four years later, I was fighting for my life. I think some of this is where my character comes from, because I have had to be strong.”

He adds that the support of family and friends, and the staff at Papworth Hospital, also encouraged him to keep going. “I didn’t want to let people down.”

He is keen for everyone to sign the Organ Donor Register and talk to their families about their wishes. And his message is not to give up on life even if you have heart failure. He says: “I want to inspire people – not because I am special, but if a normal bloke like me can get through it, then anyone can.”

Kevin’s campaign website is at organsequallife.co.uk

Read more about why you should sign the organ donation register