Recovering from takotsubo

After being diagnosed with takotsubo cardiomyopathy, Sarah soon discovered how little was known about the condition. Now she’s sharing her story to help others facing a similar journey of uncertainty.

When Sarah’s dog suffered an anaphylactic reaction, Sarah never dreamed the physical and emotional stress of the incident would trigger her own life-threatening heart event.

The pair were out walking on a November morning in 2017, when Mia the dog was stung by a bee. Within minutes Sarah could see she was struggling to breathe.

Desperate to get her to the vets as quickly as possible, Sarah carried the 25kg dog up a very steep hill – the shortest route back to the car.

“Before I scooped her up in my arms and carried her up the hill, I got on my knees and prayed, ‘Please don’t die’. It was very stressful and physically very difficult.”

Thankfully Mia survived, but Sarah had found the event particularly traumatising. “I commented to my children many times over the rest of that day, ‘Oh my God that was the most stressful situation I’ve ever been put in.’”

That stress was to take its toll later that same night.

Waking up to heart attack symptoms

“I woke up at 2am with a very definite crushing sensation in my chest, pain going down my arms and feeling quite clammy.”

Thinking she’d pulled a muscle as a result of the physical exertion earlier in the day, Sarah took some anti-inflammatory medication. However the pain continued.

“I didn’t go back to sleep, it was too sore. I was just lying there thinking about news stories I’d heard on the radio about the symptoms of heart attacks. In fact, I’d heard one only days before. That’s what was flashing through my mind.”

By 4am, she decided the only option was to go to the A&E department at Auckland Hospital to have her symptoms checked out.

Takotsubo diagnosis

Once at the hospital, staff quickly hooked Sarah up to an electrocardiograph (ECG) machine and carried out some blood tests, which soon revealed damage to Sarah’s heart.

“Within another half an hour I was having an angiogram, which I found incredibly painful. It was incredibly sore.”

The angiogram revealed Sarah was suffering from a little-known condition called takotsubo cardiomyopathy.

Takotsubo causes a change in the heart’s normal pumping function leading to symptoms that mimic a heart attack caused by coronary artery disease [link to heart attack page].

“The doctors said it was a classic takotsubo. They said my arteries were crystal clear – which made me feel quite happy – but that I’d suffered a takotsubo stress-induced heart event.”

Sarah spent 24 hours in intensive care before spending a further six days on the cardiac ward.

“I have to say the staff were absolutely fantastic. People moan about the health system, but I couldn’t say anything negative about the care I received in Auckland hospital.”

What’s was the cause?

Like most people who suffer a heart event, one of the biggest questions in Sarah’s mind was ‘what caused this?’

Unfortunately for Sarah and others like her, the exact cause of takotsubo cardiomyopathy still isn’t completely clear – although it is known that stress can play some kind of role in the condition and it is more common in post-menopausal women.

The majority of sufferers (around 70%) have experienced significant physical or emotional stress in the lead up to their event, hence the condition’s alternative names: stress-induced cardiomyopathy or broken heart syndrome.

Sarah remains unsure whether her event was purely as a result of the physical and emotional stress caused by the situation with her dog, or whether it was a culmination of a particularly stressful period in her life.

“The day all the stress happened, was at the end of a very long and stressful few years of my life. That day was probably just the nail in the coffin for me.”

How long will recovery take?

Sarah has also found it difficult to get accurate information on what to expect during the recovery period. Medical staff suggested she should be back to normal within about three months but this hasn’t been the case.

Sarah says it’s only recently that she’s begun to feel better. “It’s only in the last couple of months that I’ve started to feel an increased wellness. But even nine months on, I still can’t walk and talk at the same time. I just can’t do it.

“I feel frustration that I don’t have my energy levels that I used to have. I haven’t started working because my job is really physical. I’m a massage therapist and so my arms are everything, and I feel that I still have weakness down my arms. The catch 22 is that I need to start working because I need the money.”

Ongoing symptoms

Sarah is not alone in her recovery experience – recent research from the UK has indicated that recovery from takotsubo may take longer than clinicians first thought. It showed some aspects of heart function are still impaired at least four months after the initial takotsubo event and that it is not uncommon for people to experience ongoing symptoms months later.

Sarah’s ongoing symptoms include breathlessness, fatigue, and pain in her arms and chest. On a couple of occasions she has gone to hospital, concerned she may be suffering a second takotsubo event.

Although these have been false alarms, one of the visits prompted clinicians to do a Holter monitor test which revealed she was suffering from bradycardia, an unusually low heart rate.

Lack of information

The lack of information and available treatment for these ongoing symptoms has been a source of frustration for Sarah.

“My GP is very caring and very sweet, he’s searching for answers to try and help me, but he doesn’t always know,” Sarah explains.

Meanwhile, an outpatient appointment at Greenlane Hospital about six months after the event, left Sarah worrying that her symptoms were all in her head.

“The registrar kind of led me to believe it was all psychological because I wasn’t feeling better. That was hard to cope with.”

While she’s happy not to have the clogged arteries caused by coronary artery disease, Sarah has found it frustrating there isn’t more that clinicians can do.

“In some ways I should go, ‘I’ve got clear arteries, yay, that’s really good’, but it would be nice if it could have already healed properly.”

A shock for Sarah and her family

“Having a heart event was a real shock,” Sarah admits. “It’s not something you ever expect. I’m only 54 for goodness sake. 54 feels way too young to have a heart condition. Especially when I’m not in the danger zone for [ischemic] heart disease. I’m relatively slim, I don’t have high cholesterol, and I don’t have diabetes.”

But the risk factors for takotsubo tell a different story, Sarah notes. “I’m a woman. I’m the absolutely smack bang in the middle of the age range, and I had stress galore.”

The event was also a shock for Sarah’s family and friends. “My kids were quite frightened by it I think. My boys ranged from 17 to 21. I am a solo mum, so I’m their world. They’ve become more helpful, more caring since. They’ve made an effort to help out more, physically which is great.”

Meanwhile she feels some people have been baffled by her slow recovery.

“When you tell people you have a heart condition, most people assume initially it is diet-related and that you need a stent, but that once you’ve had that stent you should be healthy and reinvigorated. So they look at you, as if to say, why is it going on so long?”

Sharing stories

Sarah says there is a lack of support for takotsubo sufferers in New Zealand – the only support groups available are based overseas.

However she was heartened by stories shared by other people with takotsubo during a recent information day at Auckland Hospital.

“It’s good to know you’re not alone. When you’re feeling so unwell and other people confirm that they’re unwell, it lets you know that it’s not all in your head. While everyone’s story was different, they all had commonalities that were heart-warming and reassuring.”

She says that’s having someone to talk to about her condition would have been really helpful in the early stages of her recovery.

“It would have been really nice to have had a support person who has been through it, someone who could identify and understand the situation you’re in. Even just a phone call, to say, ‘You’re doing ok. This is normal.’”

Now that she’s further on with her own recovery, she’s happy to talk to others who may have experienced the same problem. “If there’s anyone out there, who suffers takotsubo and feels they need to talk to someone, I would talk to them in a heartbeat.”

 

Shared November 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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