Dealing with diagnosis
Receiving a diagnosis of a heart condition can be difficult. Sarah Brealey offers tips for dealing with it and useful questions to ask in your appointment. We also hear from a cardiologist and counsellor, and find out how Kevin Munden, (pictured) has gradually come to terms with his condition.
Kevin Munden, 44, from Newark-on-Trent, describes how he discovered he has a condition that can lead to serious heart problems:
The first sign that there was something wrong with my heart was when I collapsed in my doctor’s surgery during an unrelated routine appointment. I’d blacked out in the waiting room and when I woke up, I was in the back of an ambulance.
At the hospital they did an ECG, and monitored me overnight, and then they sent me home. A month later, I was going up the stairs in my building when I collapsed again. I was taken to hospital for more tests and monitoring, but was sent home again. By then, I was feeling completely back to normal, so I didn’t really worry about it.
A couple of days later, I got a letter from the cardiac team at Bart’s hospital asking me to come for an appointment. It actually didn’t occur to me it might be important.
My appointment was at 4pm. A nurse took me into an office and introduced me to two doctors I’d never met before. They asked me lots of questions. And then the cardiologist said that the ECG from my previous hospital visits indicated that I probably had a rare genetic condition called Brugada syndrome, which can cause disturbances of the heart rhythm.
The doctors explained how it affects people, the fact that some people have no symptoms, some experience blackouts, and that some people die from it, but I didn’t really take much in. I was in complete shock.
I felt like my world had been blown apart
They said there was a risk of sudden death, so I realised it was quite serious, but the thing that struck me most was when they said they couldn’t let me leave the hospital without treatment. I felt like my world had been blown apart.
I had an ICD fitted to correct any potentially life-threatening heart rhythms. When I came round I just remember thinking ‘I have got a machine in my chest’. I’m quite thin, so you could see the shape of it, and the scar seemed so big.
I got a lot of support at that time from my family and friends, and I still do. I have got a great set of friends and they all came to visit me in hospital. When you are having a bad day it really helps to have someone who can send you a text or give you a call and make you feel better.
When I went back for my three-month check-up I still hadn’t come to terms with it – I thought perhaps there had been some kind of mistake.
The first year was the worst. I split up with my partner because he found it hard to deal with – he was really upset and wanted someone to blame, and I couldn’t cope with that. Then there was the fact that I couldn’t drive at first. That was difficult, but at least now I am back behind the wheel. I had work problems, too, and I applied for lots of jobs, but when I told them about my heart condition they said I’d be too much of a risk and they wouldn’t be able to get insurance. It was a bit soul-destroying.
Now I am retraining as an accountant. I have an analytical mind and I enjoy numbers, so that side of it has been good.
I realised I couldn’t let my condition rule my life, and that was a turning point for me
It has been a gradual process of learning to deal with things in my head. Being able to talk to my consultant helped. At one point, I wanted to have my ICD taken out. But he explained it’s there to prevent me from dropping dead, and I could understand that.
About a year after my diagnosis, I had a period of reflection and thought about what had happened over the past months, what could have happened and the fact that I could have died. I realised I couldn’t let Brugada rule my life, and that was a turning point for me. I thought, ‘I can’t let something that could have killed me ruin the next 25 years.’
Change of scenery
Around the same time, I moved out of London into the countryside. It was helpful to have a change of scene and to get away from the hustle and bustle of city life, and I have a less stressful existence now. I have four dogs and I walk them a lot – they keep me busy and active.
I don’t think about my condition nearly as much now – maybe once or twice a month, if that. I have put it in a compartment in my mind, and that is where it stays, apart from times when I go for my hospital appointments. You have to get on with your life.