Cardiomyopathy turns world upside down

Becky was a busy 22 year old working in the film industry in Fiji, when she suddenly began to suffer extreme breathlessness. A week later she’d been diagnosed with cardiomyopathy and was fighting for her life in North Shore Hospital.

Two years ago, Becky was living the dream. She’d relocated to her birth country, Fiji, with her family, and had a career she loved in the film industry. She spent time off from her 12-hour-a-day, six-day-a-week job, kayaking, fishing, swimming and enjoying Fiji life.

But in August last year, Becky’s world was turned upside down by heart disease. The first symptom she noticed was a sudden onset of extreme breathlessness. “In the space of two days I couldn’t walk up the stairs in my own home to the kitchen and get a meal.”

Her doctor in Fiji wondered if it could be asthma, but Becky instinctively knew it was something more serious. She was also concerned about the quality of healthcare in Fiji. Earlier in the year she’d suffered a head injury in an accident and experienced the Fijian healthcare system for the first time.

“It was terrifying, a very depressing situation. We realised that if I was going to deal with something more serious than the head injury, I needed to be elsewhere.”

Becky’s father is a Kiwi, and she and her mother are New Zealand residents, so the decision was made to travel back to New Zealand. By the time they arrived in Auckland, Becky had pain and swelling around her chest and abdomen and had been awake for nearly five days straight because the breathlessness had become so severe.

Onto the high dependency unit

Her GP in New Zealand immediately sent her to hospital where A&E doctors lined up an echocardiogram for the next morning. By the following night she was in the High Dependency Unit in critical condition.

“When I ended up in HDU, that was the moment that I realised it was a lot more serious. It was about 10 o’clock at night and there was this big team of specialists who came in to see me. It was the strangest feeling knowing that at this late hour of the day, for some reason, this team of specialists had come back to review my case.”

On the third day in hospital, Becky was moved to the cardiology ward and on the fourth morning she received her diagnosis: cardiomyopathy and heart failure.

“At that point, my heart was functioning at only 13%, which is a scary thing to hear. It was a very big shock. You never want to be told by the doctors that you’re lucky to be alive but you certainly don’t want to hear that from them when you’re 22 years old.

“I had my family with me which was great, but still nothing was really sinking in as to how serious it was. I couldn’t quite process it, that I was never going to be able to go back to the way I used to live and the lifestyle I’d been living.”

Adjusting to a new lifestyle

Becky was in hospital for 16 days. When she was finally discharged she had a whole new life to adjust to, without her friends or the work she had loved so much.

Although she found the idea of life-long medication relatively easy to accept, it took a while to get the medications right because of problems with low blood pressure. Also challenging was the dietary change, in particular the very low sodium intake and the fluid restriction needed to prevent the fluid build-up caused by heart failure.

“In the beginning I shut out absolutely everything with sodium. My food was extremely bland, I was eating as much chilli and lemon and spices as I could get. It took me a while to find a balance. Because there is a difference between a low sodium diet and a no sodium diet. There are some allowances for sodium and having a piece of bread is not going to be the end of the world.

“Also challenging is the two-litre-per-day fluid restriction. “I felt so dry, and I still feel really dry. For me, that’s been harder than removing salt.”

Struggling to exercise

Previously a very active person, Becky is now also struggling to exercise. “Walking is exhausting, so if I have to walk up a hill I am taking my time because I can’t stand the feeling of breathlessness. 

“I’ve also had some really bad muscle spasms and crippling pain that comes on at random times. I don’t want to become dependent on painkillers because I don’t like the idea of being dependent on yet another drug, I’m already taking so many. But it’s gotten to the point where the doctors are just like, ‘Take the pain medication, you can’t live with pain all the time’.”

The ups and downs of cardiomyopathy

Becky knows that life with cardiomyopathy will be a long journey with significant ups and downs, some of which she has already experienced.

Three months after her initial diagnosis, an echocardiogram revealed her heart function had improved from 13% to just under 30%. But a second echocardiogram another three months later, revealed little further change. “That was extremely disappointing. After having this big jump of positive to suddenly, ‘No, you’ve made no real progress’.” 

Another three months on, Becky received the exciting news that heart function is now up to 40%. In the meantime, doctors have decided they won’t need to insert an Internal Cardioverter Defibrillator (ICD).

Diagnosis takes emotional toll

Not surprisingly, Becky’s condition has taken a toll emotionally. “I was a 22 year old in the film industry. I lived in Fiji, so fishing, boating, kayaking – it was all in my back yard. I had the world in my hands.  So suddenly having all of that taken away from me was extremely hard to deal with.”

About five months after the initial diagnosis, the emotional impact really hit. “It was my birthday, which is right after Christmas and New Year, that I had my first very low point in the adjustment process,” she recalls.

“Christmas is usually spent with a big group of friends. So all that time I was getting emails and calls and texts saying, ‘We miss you’. And my birthday was an entire day of people saying, ‘You have to be positive, you have to keep up this great attitude’.

“I wanted to scream and say, ‘No you don’t understand what I’m going through. And please don’t tell me to be positive, please don’t tell me to think that this is God’s path for me. I don’t want to hear any of that, I just want to deal with it in my own way.’  So that was the first time I really broke down, that I let myself cry over the whole situation and the adjustment.”

Looking to the future

Becky still faces a number of uncertainties around her condition and what it means for her future.

“The doctors have been really hesitant to say too much, mainly because they couldn’t, they still haven’t pinned down what it was that caused it.”

The doctors thought it could be a combination of a virus and hyperthyroidism, a condition Becky had been diagnosed with about a year earlier.

“I’m still not allowed to go back to work fulltime. Working in the film industry, when we get a job we tend to work six days a week, 12 hour minimum days. It doesn’t work for heart patients very well. And it’s certainly not allowed at this stage.”

Becky has recently managed a couple of trips back to Fiji to see family and friends, and in the long term she hopes will be able to return permanently. But for now she needs to remain in New Zealand under the care of her cardiology team.

To keep busy and engaged, she’s been volunteering for Rotary, which she already had considerable involvement with, and the Heart Foundation. “I still suffer from chronic back pain and muscle spasms that we haven’t been able to figure out the cause of, which makes daily life a bit hard.”

Sharing your story helps

Sharing her story and hearing from others has helped her emotional wellbeing. “I met a lot of great people while I was in hospital, not just the doctors but the patients. And I’ve stayed in contact with a few of them. I was 22 in hospital, and ironically I was the youngest person on my ward by 22 years, so there was this big age gap but I still find it so helpful to be able to talk to them. Because there’s so many other people out there that are dealing with it and having to adjust.

“I am very early on in my journey. I’ve spent a lot of time writing and a lot of time speaking to other people who are dealing with heart conditions and other chronic conditions, trying to understand how people go about their daily lives with things like chronic pain or constant exhaustion because it’s something that was so foreign to me.”

She encourages others who find themselves in a similar situation to connect with others and to get help when they need it.

“Reach out and ask people for help. Absolutely. Because it is difficult to stay positive. There is going to be a point where it will hit you and it will feel like it’s never going to end. Even if you are the most positive person in the world, something will trigger it. So it’s just finding a support system that works for you.”

 

 

Shared August 2018

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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2 Comments

  • Becky 2 November 2018

    Thomas, thank you so much for letting me know that you have read my story. I love hearing from people that have gone through the same shock and adjustment as me. The pity thing was definitely a bummer but I’ve found that other patients have by far been the most understanding. I hope your recovery is going well! I also hope you find a way to get back to work you enjoy. I know I miss it like crazy.

  • Thomas 1 November 2018

    Thank you for sharing your story. I’m in the same situation with cardiomyopathy, just trying to find out how other people are dealing with it and its good to hear how you’re coping with it. I hear you on not wanting peoples pity/words of encouragement lol so i keep to myself these days.
    I was working film set security (heart attack on set of Ash vs Evil dead) and i miss the long days/hours! i actually loved that job.
    anyways i hope we both get better and thanks for sharing!