Connie

Cardiomyopathy

Heart failure

Heart valve problems

Rheumatic fever and heart disease

Heart failure will never change me

As a result of hypertrophic cardiomyopathy and rheumatic fever, Connie has heart failure and valve problems, but she's determined her heart conditions won't stop her doing the things she loves.

Connie's heart disease journey began when she was born with hypertrophic cardiomyopathy. Then at the age of 11, she also developed rheumatic fever, which she received penicillin tablets until she was 18.

"Mum had to mash them in honey for me to take them, because I couldn't swallow the tablets." Connie remembers.

As she was feeling tired all the time her condition stopped her being active at school, but as Connie got older, sports became a real passion.

"I ended up being a good runner at school, I could high jump and long jump and I won the 100 metre hurdles, the 200 and 1500 metre running, and I won second in the cross country at my college. I loved my sport and I also played women's soccer."

At that stage, she had no idea of the impact her heart condition and the rheumatic fever would have on her adult life.

Heart failure symptoms begin

Her passion for sports continued well into adulthood, but as she reached middle age activity became harder. She also noticed some unusual symptoms.

"I was breathless. I thought I had asthma but of course that was heart failure and a thyroid condition. My feet were swelling," Connie says. "I was gaining weight as well which was all fluid and I never knew why I was getting fat."

The symptoms were having an impact at work and at home.

"I was struggling to get to the top of the stairs with a vacuum cleaner and lifting. I had no problem with lifting before – I had a job where I stacked pallets. It's hard when you can't do the things that you used to do. You feel like you're an old person but you're not."

At the same time, Connie faced a lot of stress in her personal life. Her father had recently died from cancer, and her step-father had also been diagnosed with terminal cancer.

In 2008, with the support of her sister, Connie went to the doctor. She was diagnosed with heart failure and heart valve problems, which was caused by her childhood rheumatic fever. She was also diagnosed with thyroid problems and gall stones.

"I was diagnosed with heart failure and then I found out that I might have to have an operation later on. That was quite a big blow, and I lost both my fathers through cancer, then my uncle and my nephew because of heart conditions. My Step Dad told me when he was dying that I had to "stay strong", and even though he is gone, his memory keeps me going."

Treatment for her heart condition

Initially Connie's heart conditions were treated with medication.

"They gave me thyroid pills, which the doctor had to be careful with because of my heart, and they also gave me pills for my cholesterol and lots of other tablets. There's quite a few. The older you get you end up with an extra pill!"

In September 2017, Connie was scheduled to have an alcohol ablation at Wellington Hospital to attempt to improve the hypertrophic cardiomyopathy condition and aid the heart failure symptoms. Unfortunately, Connie had been coughing up blood and needed to lose quite a bit of fluid before they could do the procedure, so she was sent back to the local hospital while her condition improved. Two weeks later she had the ablation.

Heart valve surgery

In 2018 she was sent to Wellington Hospital to have heart valve surgery.

At first Connie didn’t tell any of her family about the surgery.

"I didn't want to tell my mum straight away about my operation so I told my best friend and she was such a supportive friend. But I couldn't tell mum because my second father was dying of cancer at the time and at first I just couldn't tell her. I didn't want any visitors because I was embarrassed because I was so fat in hospital because of all the fluid that I had gained.

However, Connie soon discovered that sometimes family is the best medicine.

"Within one or two days I had no visitors and I couldn't stand it. In the end, when I told my mum, she brought everyone to see me. They all came, the whole whānau, and it was really wonderful."

Connie was also grateful for the support she received from the staff at the hospital.

"Wellington Hospital was so good – all the people were just wonderful. They even gave me chocolate cake because I spent my birthday in the hospital. It was like staying in a motel. I was saving up for a holiday but I had a holiday in Wellington."

Recovery after the operation

It was a couple of months before Connie could return to work after her operation, and she realised she needed to take things slowly.

"I had to start all over again very slowly, just a little bit each day and build up. Your self-esteem goes, you feel trapped because you're frightened. My work has been very good to me and I won’t forget that but I have lost a lot of work mates, friends at my job before this and even after I have come out of hospital. It has been very hard to cope with all that but I have just got to be strong every day.

"Sometimes I feel intimidated by people because of my health condition and I was worried I would be discriminated against at work."

Connie continues to take medication as prescribed by her doctor. As well the as the cholesterol and thyroid pills, she also takes diuretics, beta blockers and aspirin every day. She also goes for regular check-ups with her GP to ensure her heart is working to the best of its ability.

A focus for Connie in her recovery has been healthy eating and getting back to exercise, but she admits there are some things she can’t do.

“It is very, very scary to get on a bike now, when I know that I’ve had an operation and they’ve cut me down the middle. I'm scared to bike through traffic. You can be in a gym and be on a cycle, but there is nothing like being out in the nice fresh air and looking at scenery.”

Connie says the key is to find new things to keep you active.

“You don’t have to run if you can’t anymore but there’s other things you can do. There’s aquarobics out there, which I thought I would never enjoy, but I’ve met women of all different ages and I love it and that’s something to live for every day.”

Getting support

When recovery is challenging, Connie says it's helpful to get support from people who've been on a similar journey.

"Try and get support out there. A lot of people don't understand and they don't know what's on your mind and how you feel. They think they know everything about your operation, but they don’t know which one you’ve had and they don't know what it's like to walk in your shoes."

She also believes it's important to stay true to yourself, even if you're living with a heart condition.

"I am in my fifties now, but I still am a competitive person and just because I have heart failure, it will never ever change me. I am still strong and I want to help others out there with their sport or to do something. I recently did a bike ride in memory of my nephew. No matter how old you are, never forget your past and what you could do."

Shared December 2019