Managing cardiomyopathy independently

When Brian first learnt he had hypertrophic obstructive cardiomyopathy he was told he was one of the lucky ones - often it’s only discovered post-mortem after a cardiac arrest.

Brian was just 46 when his GP sent him for an echo scan after detecting a heart murmur during a routine check-up in 1999.  

 “After the echo scan, within a matter of minutes, my wife and I were in a room with a cardiologist,” Brian says. “He explained I had hypertrophic obstructive cardiomyopathy (HOCM) – quite a mouthful. We were lost, there was just too much to take in.”

It wasn’t until the following day that Brian had a chance to do some research. As it was the 90s, he went to the library and got a book written in layman’s terms which explained the condition. It was then he began to understand what the diagnosis meant – that HOCM was a life-long, incurable condition that sometimes results in sudden cardiac arrest.

Until that point he had been working long hours, drinking and smoking too much. But with the help of the cardiology team, hospital support staff and his family, Brian started to make lifestyle changes such as taking the prescribed medication and improving his diet and exercise.

Open heart surgery

A number of years later, Brian’s cardiologist suggested he should undergo a septal myectomy - a surgical procedure performed to reduce the heart muscle thickening seen in people with HOCM...

Initially Brian was hesitant to have the open heart surgery. “They said it would improve my quality of life, just improve. So I refused. I spoke to my kids. I said to them, ‘I don’t want to have it, because my condition, it’s incurable,’.”

But his family felt very strongly he should have the procedure done. “The kids accused me of being selfish and denying them parenting, grand parenting and great grand parenting. They won.”

So in January 2011 Brian underwent the septal myectomy. However it is a decision he still regrets and questions the extent of the benefit it had.

‘Nine months later, the doctor called me in and told me to stop work.  I was angry, angry. That procedure pissed me off big time.’

Managing his condition independently

Several years ago Brian’s marriage broke up and his children now live in other cities, so one of his biggest challenges has been managing his condition on his own.

Following the separation, he tried moving to the Gold Coast so he could be closer to one of his sons. “He said I had to come, or else they would just come and drag me over. So I went over, but I only lasted 3 months. I’m a sook, I get homesick - even to live alone.” 

Now he’s back on his own, he feels very aware of the need to manage his condition carefully.  “There’s not a day goes by now when I’m not aware that I have a serious condition, so I work with it, manage it or try to manage it.”  

Keeping fit

Brian is determined to stay as well as he can. Despite his chronic breathlessness, he frequently goes to the gym and says he is very comfortable there. However, through trial and error, he’s found out that it’s important not to overdo things.

“Over the years, I cycled and walked this city - I loved it.  I could still do it post op, but I reached that point, where it just wasn’t possible.  I would come home from the gym and say, “I’m good, I’m going to walk down to the village,” and then I would get stranded down there for over an hour. I was hoping that it wouldn’t rain so as to find a park bench to allow my heart to settle.”

Now he uses a mobility scooter rather than walking or biking for transportation, but keeps up the regular gym work.  “Going to the gym, it helps both mentally and socially.”

Work around the house

That said, there are still times Brian overdoes things. He cites a recent visit from his son’s family as an example, which required a big effort in terms of cleaning and cooking both before and after the event.

 “Because it was such a beautiful weekend and I was feeling good, I pushed myself, and re-washed all that bedding, aired out the mattress and all the kids’ blankets, all those fitted sheets. I got it all done yesterday, I pushed myself. But I paid the price. But it’s a labour of love. I won’t even have my daughter in law do it, it’s an expression of my love for them.”

Always on his mind

The fact that Brian’s heart condition is incurable is constantly on his mind. He has had a lot of time to think about his death, and he wants it to be on his terms.

Recently, he had been considering going to a family reunion on a marae in Omahu, Hastings. But unable to confirm the situation with recent water hygiene problems in the region and fumigation for roaches changed his mind.

He admits that his condition make him less inclined to travel. “I am comfortable in my own environment. I don’t like being anywhere else, and it probably makes me a bit more reclusive.

“But I don’t call it reclusive,” he adds with a laugh. “I just tell my friends that I am up myself.  I mean, I put a spin on it.”

“The fear I have is greying out – dizziness and a lack of spatial awareness. I have never come to blacking out, but greying out is quite frequent and I have a high likelihood of losing control of my bowels and this all stresses the heart out.”

He also keeps a medical alarm close at all times and an ‘ambulance travel pack’ on the bench organised with medication, clothing and toiletries. “That way, the ambulance staff can come in and just sweep it off the bench if they need to,” he explains.

Medication

Brian is on long-term medication, which does have some side effects.

“At times I will get called into the bank to question my signature. Because of the long-term medication, I get the shakes and my signature is not the same. It’s like these magnetic key pads and I get so angry with them because I can’t type and I have to start all over again.” 

Loneliness and isolation

Brian feels quite isolated at times – particularly as his is a less common form of heart disease. “I’m alone in two forms, alone with the condition and with my marriage breakup.”

When he’s feeling down, he finds humour a good pick me up. “I use my humour. If I’m down, I pick myself up and if someone else is down I help them.”

And he’s thankful for the things he does have. “Really I have got nothing to complain about.  I love my kids, my grand kids and my great grand kids and they love me right back.”  

 

Shared July 2017

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

Find similar stories

View all stories
  • Be the first to post a comment.
Loading...