Living with dilated cardiomyopathy

Simon Morgan

Finding out he had dilated cardiomyopathy prompted Simon Morgan to live life to the full. Doireann Maddock hears his story.

"My outlook is it’s not how long you live, it’s what you put into your life,” says Simon Morgan. He has lived by that philosophy since discovering he has dilated cardiomyopathy (DCM), a heart condition he inherited from his father – and he has a rewarding business and a collection of beehives to prove it.

Simon, now 58, is the first person on his father’s side of the family to survive beyond his 50th birthday in 150 years. Growing up, Simon remembers his dad being told he had an enlarged heart, and when his father died suddenly at the age of 44, Simon, who was 14 at the time, was advised to have his heart checked out. “The tests were all OK, although the doctor said I should come back again when I was in my 20s. But of course I never did, because when you’re that age you feel invincible and it was the last thing on my mind.”

Most people who are affected by DCM remain well, but this wasn’t the case for Simon. “I’d been living a great life working as a chef all over Europe,” he says. “This took me into lecturing, and I was Head of Catering at Leicester College. This was back in 2002, and one of my hobbies was working as a football coach at the local primary school. I was running around the pitch one day with the kids and I collapsed. Luckily, someone phoned an ambulance.”

You get more of a hunger and an enthusiasm for life when you have had a condition like mine

Paramedics rushed Simon to Leicester Royal Infirmary, where he spent about a month undergoing various tests that eventually diagnosed dilated cardiomyopathy. “It was a real bombshell,” he says.

“Initially I felt quite well and the first six months were fine, but things started to worsen soon after. I was dizzy and lightheaded and had bad fluid retention in my legs and abdomen. I also had terrible muscle aches.”

Simon’s diagnosis prompted him to make a ‘bucket list’ of all the things he wanted to achieve. This included buying his dream bike, having an allotment and reintroducing honeybees into his village, Newbold Verdon in Leicestershire.

He also began studying genealogy, which is how he discovered he is the first person on his father’s side of the family to live past 50. “I went all the way back to 1760 and a pattern of inherited dilated cardiomyopathy was clearly indicated,” he says.

Inherited condition

Dilated cardiomyopathy is a disease of the heart muscle where it becomes stretched and thin, the muscle walls are weaker and the heart doesn’t pump blood around the body as strongly as normal. It can be a genetic condition, meaning it may be caused by a mutation in one or more genes that can be passed on through families. DCM isn’t curable, although for many people, symptoms can be controlled by using medicines.

Other options can include having a pacemaker to help improve the pumping efficiency of the heart and, if there is a risk of developing a dangerous heart rhythm, you may be fitted with an ICD.

After his first collapse, and when his heartbeat went dangerously low, Simon was fitted with a pacemaker and prescribed medication.

Simon MorganWithin a couple of years of his diagnosis, Simon’s health deteriorated and he collapsed again. His heart was found to be in a dangerous and fast rhythm and he was fitted with an ICD.

After six months, the ICD delivered its first shock. “It’s not a particularly nice experience, but it’s better than being dead,” Simon explains. “One of my consultants said to think of it as my guardian angel, which made a lot of sense to me.”

Despite best efforts, Simon deteriorated further and doctors gave him a life expectancy of about a year. He was assessed for a transplant soon after, in 2004. Things went downhill rapidly that winter and he was put on the transplant list the following year.

“I was told that the average waiting time was several months and I couldn’t help thinking that I was already 11 months into my 12 months’ life expectancy,” says Simon.

In June 2005, Simon finally got the call telling him a donor heart had become available. He made a good recovery post-transplant and decided to retire. He then began to work his way through his bucket list.

“The way I looked at things, I had a completely clear blackboard and I could fill it with whatever I wanted to,” he explains. “It was an opportunity to build my life from scratch.”

Enthusiasm for life

Among other things, Simon devoted his time to gardening and kept beehives on his two allotments.

After about four years, he ended up with 90 hives. “You get more of a hunger and an enthusiasm for life when you have had a diagnosis like mine,” he explains. “So I went a bit over the top with bees.”

I had a clear blackboard and could fill it with whatever I wanted. It was an opportunity to build my life from scratch

Developing his beekeeping led to the launch of his business. “I decided to learn about importing beekeeping clothing and equipment and kept costs low so that I could help other beekeepers start up,” he says. “What began as a hobby has grown into a half-a-million-pound business that employs five people and supplies beekeeping equipment worldwide.”

Simon still keeps bees, but with the expansion of his business, he’s scaled it back to a more manageable 10 hives.

Simon worried he might have passed DCM onto his children, Graeme, Alan and Holly. “After I was diagnosed all three were screened and given the all-clear,” he says. “Five years later, they were screened again and everything is still OK.”

Repeat screening is important and, because he didn’t follow up on being rechecked in his 20s, Simon is very aware of how important this is for his family. “I know that this type of problem often won’t become apparent until after the age of 30, so my kids will be screened regularly, but they are not paranoid about it and we just live our lives as normal.”