Stroke reveals hidden heart problems

Kristine’s stroke back in 2004 was a mystery to doctors until they discovered a long list of undiagnosed heart problems, including childhood rheumatic fever and the atrial fibrillation (AF) that caused her stroke.

Recovering in hospital after a major stroke, Kristine was surprised to find doctors talking about her heart. She remembers having problems with her tonsils as a child, but it was news to her that she had had rheumatic fever. “I must have also had strep throat somewhere along the line,” she says.

Kristine’s rheumatic fever had damaged the mitral valve in her heart, causing another heart condition called atrial fibrillation (AF). Although she hadn’t noticed it before her stroke, Kristine’s heart was beating irregularly, allowing for blood clots to build up. One of these blood clots had caused her stroke.

Home after the stroke

It was several years before Kristine’s heart condition was deemed bad enough to warrant surgical intervention. Waiting was difficult, especially as she started spending more time in hospital and her AF became more frequent. “My heart was pounding, and I was going backwards and forwards all the time to Timaru hospital,” she remembers. “They told me there was nothing they could do until the AF got worse.”

“My husband was quite beside himself when things weren’t going right. The kids found it hard. They found it quite darn scary. I just thought, ‘Well, I’ve got to carry on. Life’s too precious to give up.’”

Kristine’s mother was a great source of support. “She was a fantastic listener, and when things weren’t going right I’d talk to her and she always made me feel better. She was the most positive person you could ever think of. So positive, and a great mum. If I hadn’t had her, I don’t know I would have coped very well at all.”

Open heart surgery

In 2010, Kristine had surgery for her damaged heart valve. “I was going into AF all the time, and I think the actual valve was about non-existent by then. The surgeon went in to get it out, and he said the valve just fell apart.” The surgeon also worked on Kristine’s atria, where blood had been pooling and clotting to cause several mini-strokes.

This surgery, although helping to prevent further strokes, had no effect on Kristine’s AF. During her recovery, she lived for several months with her heart in near-constant atrial fibrillation until she was sent to Christchurch hospital for an electrical cardioversion, where a defibrillator was used to give a controlled electrical shock to her heart, to try and restore a normal heart rhythm. “After that, I was good as gold for about three years...”

AF starts again

“I’ve gone back into atrial fibrillation again now,” Kristine says, “and it’s becoming more regular. It’s not once every few months, it’s weekly and I’m finding that hard.”

When asked what her AF feels like, Kristine hesitates. “It’s a weird feeling. It’s an unusual feeling to describe to anybody. You’re sitting there and your heart’s all out of place. I can actually feel it because the valve makes such a noise.

“Your breathing goes, because the heart is quite erratic and you’ve got to slowly try and take these deep, deep breaths to try and bring it back. Sometimes it doesn’t.”

Coping strategies

Kristine finds it reassuring to visit her doctor when things are not going right. “Being there helps you feel better in yourself because you’ve got people there who know what is happening, can explain more about it and you feel more comfortable.”

Working in the garden and going for walks are key parts of Kristine’s coping strategies. She’s also keeping busy working as a teacher aide for a child with disabilities. “I enjoy it, it’s a lot of fun and it’s quite rewarding. I also help out with the other children, the little ones, with their maths, reading and writing.

“I do a lot of deep breathing. I do a bit of Tai Chi and that actually relaxes me and makes me feel better.” She also has a tablet to take when an episode starts, to help everything settle down.

“There are times when I sit down and have a good old cry. I think every now and then you need to have a good cry and then remember there are other people out there worse off than you, and get yourself up again.

“There are times when you feel quite alone and you feel it’s only you. It’s not until you go out into the world that you realise there are so many people out there that have got AF and talking to someone else with AF, it’s good, it makes you feel you’re quite sane.

“Now my husband has AF as well, and he understands how I feel. It really helps to talk to somebody about it.”

Living in the MacKenzie country, Kristine and her family are quite remote. One of the things they are currently looking at is moving closer to the hospitals, especially now Kristine’s husband has also developed the same heart condition. 

 

Shared September 2017

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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1 Comment

  • Doug 4 October 2017

    Thanks for posting your experience with AF, following early rheumatic fever.
    I had a bout of RF in 1973, and have been lucky to have had a few decades of reasonably good health. Recently, shortness of breath and a feeling that something isn’t 100% around my heart have been causing me some concern, and will probably need to follow up. As you’ve pointed out, it’s a difficult thing to describe.
    It was a real pleasure to hear that you’re coping well, and best wishes for the future.
    Doug