Living with dilated cardiomyopathy
Richard Mindham has been living with the diagnosed condition for nine years and shares his experiences as a patient
Richard Mindham, from London, UK, was diagnosed with dilated cardiomyopathy nine years ago at the age of 50. He is a member of the International Consortium for Health Outcomes Measurement (ICHOM) Heart Failure Working Group, and sits as a patient member on several committees related to heart failure, including NICE’s Guideline Development Group for Chronic Heart Failure, the National Heart Failure Audit, and Brompton Hospital’s Cardiovascular Research Patient Advisory Group.
Talk us through your life with the condition so far
About 10 years ago, I used to travel a lot to the Middle East for my job as a sales director. The long hours and constant travelling took its toll on me. I was always exhausted, and it got to a point where I was unable to recover from my exhaustion, no matter how much I slept. I had experienced this to some degree since my 30s, but not to this extent, so I stopped working to recover. Unfortunately, this didn’t help and I realised that something else must be wrong. I sought medical help and—after initially being diagnosed with chronic fatigue syndrome—it was discovered that I had dilated cardiomyopathy.
What do you remember about how your diagnosis was given to you?
I remember the cardiologist changing from being very relaxed to sombre, which was understandable given what he was about to tell me. He told me that my condition was serious, and that I would need to make substantial changes to my lifestyle. I couldn’t have any caffeine or alcohol, and I shouldn’t attempt to lift anything—not even to help my wife with the shopping. If I made these changes and took the prescribed drugs, there was a reasonable chance of improvement. If I didn’t, I would be on the heart transplant waiting list within three months. This was a huge shock for me as an active person—I loved skiing and mountain biking: it was my identity.
How did you deal with the diagnosis to begin with?
I went on a quest for information, but I didn’t feel fully comfortable with my diagnosis until about five years later. I discovered the charity Cardiomyopathy UK, and started going to information days where I met people with the same condition. They understood what it was like to have these lifestyle limitations, as well as the side effects from treatment. They also knew the psychological challenges—from thinking yourself a malingerer who can’t carry the shopping, to having uncertainty about your future, and the effect this has on your family and friends. I had no idea what would happen if I pushed myself. Would I have a catastrophic collapse (sudden cardiac death)? Was a stroke a possibility? Was I risking my health?
What does your condition stop you from doing on a day to day basis?
Initially, I was told that I could do virtually nothing. But I’ve tried to increase my level of activity cautiously as time has gone by. To begin with, basic household tasks like hoovering or mowing my lawn took several sessions over days or weeks, and I was wiped out afterwards. But it is important to do something—I don’t want to be in an armchair for the rest of my life. I am lucky that I can try to be active, because I know many heart failure patients are not able to.
Do you think that your condition is well managed and do you consider that you are informed as a patient?
I receive superb care and have nothing but praise for the cardiologists I’ve seen, but I think that you often need to be assertive to get the best out of the healthcare system. In an appointment, I might have 20 questions to ask, but there’s only time to get through five of them. Another challenge has been the side effects of my drugs. Some can substantially limit your body’s working capacity in order to protect your heart, and can make you feel very cold. The condition is chronic, so trying to come off some of the drugs is not always possible and that has been difficult. I’ve also always wanted more precise information about how much I can exercise. Can I ski above 3000 metres? Can I cycle up a hill? I’ve never been able to get specific answers, which makes it difficult to manage my activities.
Is there anything related to your condition that you feel isn’t dealt with by the healthcare system as well as it could be?
The psychological impact is a huge part of the condition. Many heart failure patients experience depression, and we need better support to cope. This type of support isn’t always readily available through the NHS, but I did receive incredible support from the people I met through Cardiomyopathy UK. They understood the challenges of living with the condition—the biochemical and psychological side effects of treatment; how to get the most out of consultations; as well as practical things, such as how to get travel insurance and how much exercise you can do.
The family and friends of patients also need help, as they experience just as much uncertainty. Partners need to know whether their spouse is vulnerable to an unforeseen incident, collapse, or spontaneous death, and need to plan their own lives around the diagnosis.
What are the most important outcomes for patients living with heart failure?
It’s about getting a balance between quality and quantity of life. When I spoke to my cardiologist, I would tell him that I would rather have a short life on a bike than a long life in an armchair. I’m lucky that I can sometimes be out on my bike, but without knowing what my limits are, I find it difficult. Having a condition like this attacks your sense of self, and it becomes a balance between trying to be who you were and figuring out your new limits.Jason Arora, life sciences, standardisation, and knowledge director
International Consortium for Health Outcomes Measurement, London
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.