Heart problems appear from out of the blue

After going to A&E for an unrelated problem Jeanette was shocked to learn she had heart valve disease. Little did she know that nine years later she would suffer a much more rare heart event – a life-threatening aortic dissection

Jeanette had thought her tiredness was simply part of getting older. It wasn’t until she ended up in the emergency department of the local hospital after an unrelated scare, that doctors diagnosed several heart problems. “I had an enlarged heart and a heart murmur,” she recounts.

Sent to Christchurch to meet with a cardiologist, tests revealed that Jeanette’s mitral valve wasn’t working properly. “In fact, 60% of my blood was flowing in the wrong direction as a result of my mitral valve not functioning properly and this was the reason for my enlarged heart. I was told I’d need to have an operation and the valve would either have to be repaired or replaced.”

“This was a real shock to me, because I thought I was pretty fit – I never dreamt of something like that. My family got an awful fright, it was a shock for them as well.”

Doctors are unsure what may have caused her heart problems, but Jeanette wonders if it may have been something genetic, as her brother has also had heart issues and needed a quadruple bypass. “On reflection, I feel that both my parents may have died of heart problems. I know they were heavy smokers, so that didn’t help things.” Having been a sickly child, she also thinks she might have had rheumatic fever which could have contributed to her heart problems.

Open heart surgery

Jeanette counts herself lucky that she had health insurance, which allowed her to go in quickly for open heart surgery through the private system.

“I had the valve repair and all was well. I went into the operation feeling like I would be fine. I had full confidence in the surgeon and I never once thought I wouldn’t come through.

“I did struggle with my recovery, even after I’d had my operation. It took me quite some time to even get out of intensive care. It was really about a year before it all came right...  

“I still go and see my cardiologist every year and he does some tests, they put me on a machine, and I get an echocardiogram. I went in March and he was really pleased with how I was progressing. I hadn’t got any worse. There was still a slight murmur there, and he’s keeping an eye on another one of my heart valves, but at this stage I’m good.”

Life after heart surgery

Post-surgery, Jeanette has found that there are some things she can no longer do. Having been active all her life, she’s found it difficult to come to terms with not being able to do as much. “But we still go camping as a family, and I stay busy with my nine grandchildren.”

Jeanette also uses her pets – Jack Russell Matilda and cats Maisie and Thomas Brown, as a way to keep herself active. She cares for all their needs and regularly walks Matilda.

“I try to be active by joining different groups. It’s very easy to think, I can’t be bothered doing something, but you’ve got to make yourself get out and about and do things, you can’t just sit at home and be miserable.

“Sometimes, you can get into a big black hole. You’ve really got to work hard at getting out of that. You’ve just got to get out and about and be with people.”

Finding a purpose for her new knowledge of heart disease

A friend of Jeanette’s went through heart surgery at about the same time, and together they started going to a cardiac support group, which they still attend monthly. They’re also regular volunteers at the local Heart Foundation branch.

“I’ve really enjoyed volunteering. It’s been great – and the best part is trying to raise money. I’m passionate about research and I’m so thrilled when I see people doing research and helping people.”

With her personal experience of heart disease, Jeanette feels she can be more sympathetic to those she meets through her volunteer work. “You know, there’s a lot of people a lot worse off that you are. But you understand what people are going through, and you can be helpful. Most people I meet, if I’ve told them I’ve had a heart operation, they don’t even believe it. I’ve been very lucky.”

Shared May 2017

Update 2018

Life continued as normal. Jeanette was in good health and her regular cardiology check-ups showed nothing of concern. But in September 2017, she suffered a frightening heart event.

Jeanette and her husband were staying down in Queenstown when she woke up with severe chest pain. “I don’t remember any of it, but my husband tells me that I woke up at about four in the morning with a pain in my chest, and he took me down to the hospital in Queenstown.”

From there, Jeanette was flown by helicopter to Dunedin Hospital, where specialists diagnosed an aortic dissection, a rare and life-threatening condition caused by a tear in the lining of the aorta.

After successful surgery to repair the tear, Jeanette spent ten days in the intensive care unit and four days on the cardiac ward before being transferred to Timaru Hospital (her local unit) for a final night before discharge.

Lucky to be alive

Jeanette is aware that she’s lucky to survive the event. Approximately 20% of patients who suffer an aortic dissection die before they reach hospital, with a further 30% dying at hospital.

“I’m very lucky, everybody says that to me. Because they weren’t sure whether the surgery was going to work or not.  Without surgery, I would have died within one to five days, I’m very lucky. The staff in Dunedin were marvellous. I got through it but it was hard work. I couldn’t get around, I couldn’t do anything. I was a real mess.”

Getting back to normal

Of course, recovery from such an event is no easy journey. “It took me four to five months to get back to normal. I’m fine now. You’ve just got to make yourself get out and do things. I feel tired a lot of the time. Half the time I wake up in the morning and I don’t feel like getting up. But you can’t do that, so I get up and do things.

Jeanette also had to get used to new medication. “I have a lot of medication now. I take nine pills in the morning and one at night. One thing I hate is that I have a fluid pill (a diuretic) I take every morning, and if I go somewhere, I’m running off to the toilet regularly during the morning.  That’s the only thing that’s a nuisance but I’m managing ok. 

The recovery has had emotional challenges too. “It’s been hard, after I had the operation I was scared to go to sleep at night. I was scared that I wasn’t going to wake up in the morning.”

Cardiac rehabilitation ‘marvellous’

Cardiac rehabilitation proved to once again be a useful tool in Jeanette’s recovery. “I went to all of those cardiac classes – they were really, really marvellous. I’d been when I’d had valve surgery and I knew the nurses and they were very good.

Another helpful tool was the Journeys programme, which Jeanette had first become aware of when she shared her story in 2017.

“I thought, ‘I wonder if many other people have had what I’ve had’. So I got on the Journeys website and I found this lady called Jenny and she’d had the same as me – an aortic dissection. So my husband printed it out and I have it sitting in a wee cabinet by my bed. If I’m feeling really rotten, I perhaps get that out and read it. And it’s good to do that. You’re sharing it with other people, so it’s great.”

Jeanette also continues to help the Heart Foundation as a volunteer and attends the local cardiac club. While there’s no-one else there who has had an aortic dissection, she finds benefit in sharing her journey and helping others with their own.

“It’s good at the cardiac club. We’ve got a lot of people that are not well. You can be sympathetic with people and listen. It’s good to be able to sit and talk with them.”

Update shared June 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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