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Hypertrophic cardiomyopathy - a journey of uncertainty

Michael* experienced extreme fatigue for more than a decade before he was diagnosed with hypertrophic obstructive cardiomyopathy (HOCM). More recently, he’s learnt he previously had an undiagnosed heart attack. He tells of the anxiety and uncertainty that come with heart disease.

Michael knows what it’s like to lose a loved one to heart disease. When he was just eight-years-old, his father died from a sudden heart attack.

So in 2009, when Michael himself was diagnosed with HOCM, he found it very stressful. In fact the diagnosis couldn’t have come at a worse time.

“It was a challenging time, because at that time my son was eight – the age I had been when my father died of a heart attack,” he explains. “The cardiologist looked me in the eyes and said, ‘This can be very serious.’ At that stage he recommended no exercise.”

This came as a huge blow for a man for whom outdoor activities such as tramping, skiing and mountain biking, had been some of life’s great passions.

“The great uncertainty for me was, could I exercise and if so how much exercise could I do? And how serious was my condition? What were the implications? It was pretty unclear to me really.”

Difficult road to diagnosis

Even Michael’s road to the HOCM diagnosis had taken a long time. More than a decade previously he suffered a bout of extreme fatigue and was diagnosed with post viral syndrome.

He continued to suffer from bouts of fatigue over the intervening years. In the late 90s he booked an appointment with a private cardiologist to check his heart health, but was given the all clear.

By 2009 the fatigue symptoms were getting worse. “Just prior to being diagnosed with HOCM, I was feeling that I wasn’t that fit. So I was doing more hill mountain biking to try improve my fitness and I was very, very fatigued.”

With his regular GP on leave, Michael saw a different doctor who felt the ongoing bouts of fatigue warranted further investigation at the hospital.

Following an appointment with a cardiologist Michael finally had his HOCM diagnosis. But rather than providing clarity, the diagnosis caused more stress.

HOCM diagnosis brings anxiety and uncertainty

“First of all I freaked out to be honest. It was a very difficult time because I’d been offered a job in a different city, I’d resigned my position and we had our house on the market. And I had a young family.

“I was getting heart palpitations. I actually went down to the hospital one afternoon and was admitted overnight on the cardio ward with lots of poking and prodding. It turned out to be due to the anxiety I was feeling.”

As well as anxiety, there was also uncertainty about the diagnosis itself. Michael underwent a lot of further medical testing to clarify the severity of his case and the amount of physical activity he could safely do.

“There then was a bit of uncertainty as to whether I had HOCM, and if I did have it, how severe it was. There was a lot of ambiguity over it. Then the cardiologist came back and said it’s probably not as serious as we first thought...”

A second cardiologist felt it would be safe for Michael to undertake some physical activity, as long as it was within moderation and sprinting and heavy lifting was not recommended.

For someone who had always been passionate about the outdoors, this brought some relief for Michael. So too did genetic counselling – a service provided by the hospital which gives patients and their relatives information about the risk of an inherited disorder and the probability for transmitting it.

“The genetic counsellor was exceptionally good and I found out a lot more about HOCM through her than the cardiologists at the time. Both our children were tested because it was an inheritable disease. They are now checked every two years and have no evidence of HOCM.”

HOCM explains previous symptoms

Michael believes the condition explains a number of symptoms he’d experienced for many years. “I think I’ve probably had this condition since my early 20s and it explains quite a few things to me. I used to go quite hard out tramping with friends, and at the end of the day I’d just physically be shaking. I just couldn’t keep up.”

The diagnosis also prompted him to revisit the cardiology report he’d received in the late 90s. He was surprised to discover mention of a heart murmur, which at the time was reported to the GP but not to Michael himself. He says it highlights the need for patients to be assertive about getting information on their health.

“Within the medical system, I feel it’s been up to me to insist on being checked and making sure I am getting the information I need,” he says. “I mean it was seeing that different GP that finally brought the HOCM diagnosis. That possibly could have come 10 years earlier.”

New medical team discover further heart disease

Four years later after his diagnosis Michael relocated and accordingly came under the care of a new cardiologist.

“They did more testing which was a good thing because the next thing that showed up was that I had quite extensive coronary artery disease and I’d had a small heart attack, which I’d been completely unaware of. I was a bit surprised that wasn’t picked up by my previous team.”

Accordingly Michael now takes a beta blocker, aspirin and a statin. “I was quite reluctant to start taking medication at my age, becoming a patient with a serious medical condition, and starting to take more and more drugs,” he says. “But I have found that they haven’t impacted me too much. My GP describes them as my ‘friends’ and says that they will likely extend my life.”

He’s also more confident about exercising with his condition. “The advice from my new cardiologist is to do exercise, but be mindful of how my body is feeling and stop, or slow down, or take a rest if I’m not feeling good.”

Lifestyle changes

Michael admits that learning to slow down was initially a challenge. “I have had to listen my body and be prepared to slow down or adjust what I do. I’ve been pretty open with friends, and people I do things with, about my heart condition and they’ve been really good about asking if I need to take a break. I no longer feel the need to keep up or to push when my body’s saying take it easy. So I’ve adjusted to it.”

The other major challenge has been dealing with the anxiety that came with his diagnosis. “I’ve become quite vigilant about my heart and how my body feels and that’s caused some anxiety for me and a stress reaction at times, like a panic attack. I’ve seen a clinical psychologist who has been exceptionally good in reducing that anxiety.

“It’s made it clearer to me when I am getting symptoms because I’m tired or my heart is beating irregularly and when, in other situations, anxiety is contributing to my symptoms. The psychologist has calmed me down over my heart condition but at the same time encourages me to be vigilant, so if something is up I go to the doctor and get checked.”

“Look after your mental health”

“I was really pleased I talked to my GP and got some support to manage the psychological side of having a heart condition. That’s something I would recommend. It’s really important to look after your mental health. I was quite surprised that it wasn’t suggested by the medical fraternity. I had to ask.”

Like anyone with a chronic illness, Michael finds has his good days and his bad. “I have days where I’m feeling really good and I have times where I am tired and fatigued. Every day there’s variation in how I feel. Sometimes I feel really tired for no apparent reason. That’s one of the things that I really struggle with, my condition is unpredictable in terms of day-to-day living.”

As well as seeking solace in the great outdoors, Michael has also tried a number of relaxation techniques such as mindfulness and a regular massage to help manage his stress levels.

He is also keen to talk to others with HOCM. “I’m interested to know what they do to manage their lives and how they live with a heart condition in an optimistic way.”

Uncertain future

Meanwhile it is still unclear where Michael’s condition will take him in the future. “I may need surgery or ablation therapy at some future stage but that isn’t needed yet.

That said, he’s taken heart from the fact his mother is still going strong at 80. “I’d assumed the condition had come down through my father but as it transpires my mother, who’s now 80, has been diagnosed with HOCM. And that’s given me optimism in that she’s reached a ripe old age and is still alive.”


Shared September 2017

*Michael is not his real name

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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  • Mandy 26 February 2023

    Thanks for sharing your story in such detail. Your story had helped me understand (or know I’m not alone in) what I’m going through. I’ve been diagnosed with hocm for 7 years now without any strong symptoms (just the occasional muscle twitch in my chest), and living an active life. Since I got infected with covid 2 months ago, the symptoms appear many times in a day and are there to remind me I am unwell. The lack of energy, fatigue, change in lifestyle had taken a toll. Moving in life at a slower pace has built up quite a backlog at work, with my house chores and etc. I have been frustrated, irritable and emotionally unavailable even with my loved ones. I only just figured out that I’m frustrated. So next for me is to learn how to manage my emotions. Thanks again for sharing your story.

  • Shelly 28 March 2021

    Thank you for sharing your story. Like you I was suffering ongoing fatigue but my blood tests always showed low iron so I kept receiving iron infusions. Sept 2020 I received the diagnosis. 2 days before flying to NZ & going in to quarantine! I received conflicting advice from doctors in NZ & Australia and my meds have been changed so many times. I am half the woman I was before the diagnosis & struggle with day to day activities. I have just started seeing a psychologist who has confirmed anxiety & depression. Other people’s stories give me some hope & help explain what I have been feeling.

  • Coastie0931 12 October 2020

    Hi there,always good to hear other people’s stories who have HOCM.You shared your story in 2017? It’s now October 2020,hope your health is going well.I have HOCM&recently; just found out i have leaky valve aswell.I’m 43yr old male,who played rugby&rugby; league right up to my 20s.Lived a life of playing sports in my earlier days plus spearfishing right up till last summer…I am now waiting on my cardiology team to sort me out a plan for surgery.I just got out of North shore hospital where i spent 5 days as they did tests echo, treadmill stress test&angiogram;.I refuse to let this disease rule my life! Good luck to you

  • Fiona 25 July 2020

    Thank you for sharing your story.  My heart failure was caused by the chemo I had for Breast Cancer.  And I’m struggling emotionally and phytologically. My cardio team includes a therapist so am taking advantage of that, but am still worried about the future