Childhood illness rears its ugly head

Published: 20 May 2016

Fitness instructor Helene Kay was plagued by fatigue, dizziness and aching but the tests kept coming back clear. The cause of her symptoms came as a complete surprise. 

“Yay, they’ve finally found what’s wrong with me.”

In October 2015, Helene Kay finally found out why she had been feeling unwell for so long.

It all started in January last year when Helene began experiencing all the classic heart attack symptoms – chest pain that radiated to her neck, jaw and back, and dizziness – without actually having a heart attack. 

In the following weeks and months, she became increasingly run down and exhausted as the symptoms persisted. 

“I’m an exercise instructor and have been exercising for years. Over the last two to three years I noticed I was getting progressively more fatigued,” the 58-year-old says.

“I had been to the doctors so many times since 2013 with flu like symptoms, fatigue, dizziness and chest pain. I’d been treated for vertigo, I’d been sent to ear nose and throat specialists and gastroenterology specialists, and everything would come back fine. I thought, ‘I’m losing my marbles’.

“My doctor was basically telling me there’s nothing wrong with me. My blood pressure’s low, I have a low heart rate, I’m incredibly fit, I’m not short of breath and I have no swelling in my legs, so I didn’t present as having a possible heart condition.”

Helene, from the Kapiti Coast, says it was frustrating to continue feeling terrible, while all the medical tests showed she was fine.

“I would drag myself from yesterday to today thinking ‘Why do I feel so absolutely yuck, tired and achy. I don’t know what’s wrong with me; I’m either a hypochondriac or I’m menopausal’.”

Finally, in October, Helene found out what was wrong – she has rheumatic heart disease. This had been indicated by a benign heart murmur diagnosed a decade earlier, which was not investigated at the time as she had no other symptoms of heart disease.

An echocardiogram (ECG) showed that her heart valves weren’t working properly, the result of an episode of untreated rheumatic fever from earlier in life.

“All this time I’d been going around in circles and everyone had failed to connect my symptoms and join the dots together.”

She says it had never even crossed her mind that she’d eventually be diagnosed with rheumatic heart disease.

“Being of Cook Island and Niuean descent, I was asked numerous times if I had ever had rheumatic fever and, of course, I’d always ticked the ‘no’ box. As far as I was concerned I never had,” she says.

“I wonder how many other people are in the same situation as me, hanging in there and feeling  unwell because they don’t realise they had rheumatic fever as children.”

Helene is now waiting for heart valve surgery and hopes the procedure will help her get back to her old self.

Her advice for other people in a similar situation is to keep looking for answers – don’t give up until you know what’s wrong with you.

She also encourages people who have been diagnosed to set their eyes on the future.

“Give yourself a goal to look forward to after surgery. Plan an event to go to or set an exercise goal. For me, being able to return to teaching group exercise classes again is one of my goals.”