“It’s a waiting game”

Andrea was born with a congenital heart condition and had pulmonary valve surgery at the age of three. More than 50 years on, Andrea's valve has started to deteriorate. Now she's in the difficult position of waiting for it to get bad enough for the surgeon to operate.

The family doctor picked up Andrea's heart murmur when she was six weeks old and referred her to a cardiologist. She was diagnosed with a congenital heart condition (a condition that you're born with) and at the age of three had open heart surgery to repair her pulmonary valve. 

"That was 1965. It was open heart surgery and afterwards I was in hospital for about six weeks. I remember having to learn to walk again because I was in bed for a long period. I went in walking and then I forgot how to walk and had to relearn that as a skill." 

Andrea recovered well from the surgery. She remained under the care of the cardiology department throughout her childhood, finally being discharged as a young adult.

Early symptoms of valve trouble 

Living a symptom-free life for the next couple of decades, Andrea didn’t think much about her heart condition. She was able to undertake considerable amounts of exercise, competing as a ballroom dancer throughout her 20s and 30s. However, in her early 50s she started to notice some symptoms of fatigue. 

"I was not able to wander around shops for any length of time and I couldn't stand at the kitchen bench for long periods of time. I'd noticed on a couple of overseas trips that my ability to walk around cities was less. I would tire quite quickly and have to get a taxi back to the hotel."

Because Andrea's symptoms had developed slowly over time, they didn't worry her on a daily basis. However, on the odd occasion, she wondered about the cause of her extreme fatigue. 

"Occasionally, when I became overwhelmed with fatigue, I'd wonder what it meant. One day in Wellington I remember thinking, 'Hmm I don't know if I'll make it back to the car'. I've had some days where I felt absolutely revolting." 

However, the symptoms weren't so frequent, that she felt the need to go to the GP.

Tests reveal valve problems 

In the end it was an unrelated doctor's appointment a few years ago that triggered a referral back to the cardiologist. While doing her routine observations, the GP noticed Andrea's heart rate was unusually high.  

Andrea was referred to a cardiologist, choosing to go through the private system at Wellington’s Wakefield Hospital. 

Following a number of tests, including ECG, echocardiogram, chest x-ray, a treadmill test and a cardiac MRI, Andrea had her first appointment with the cardiologist. 

She was told that the pulmonary valve, which had been surgically fixed years earlier, had severe regurgitation. The cardiologist had also identified a structural problem with her aortic valve which had been present since birth. 

The cardiologist told Andrea that surgery would be needed to repair the valves. 

"When he first mentioned the surgery, I said, 'That's fine, I've got insurance. I'll just have it upstairs (at Wakefield) thanks because I've had other surgery there'. And he said, 'Oh no, you won't be able to do that – you'll have to go to Auckland'. 

"So that was quite a shock because it went from my doctor saying, 'Oh I don't think there'll be anything wrong, but I'll send you just in case', to 'You're going to Auckland and you need a big operation'." 

Doctors decide to postpone surgery 

However, when the surgical team in Auckland reviewed Andrea's case they decided to hold off from operating in the meantime. 

"They looked at the results from the tests and I'm just not meeting the criteria. I'm not falling short of the criteria by too much, but not enough to qualify for surgery at this time. At the moment they think the risks outweigh the benefits." 

In the meantime, she has been put on medication, until the need for surgery becomes unavoidable.  

Initially the side effects of the new medication were unmanageable, but, working in conjunction with her doctor, Andrea has managed to find a medication that works for her. 

"I tried one medication which I wasn't keen on because I knew that it created fatigue. It took a number of medications before I got onto the right one without side effects. 

"I'm now under surveillance every six months, which is good, and certainly I know if I have any problems to see my GP, go to the Emergency Department, or ring the cardiologist. I'm not having any issues and I'm not grossly overweight, I don't smoke, so I'm not adding to the problem. So that's really it. It's just a waiting game."

Ongoing symptoms 

Even with medication, Andrea's condition continues to impact her everyday life. Her current job as a community educator for people with Parkinson's disease wouldn't be manageable if she had to work full-time hours. 

"I currently work 28 hours a week and I don't think I could go any more than that. I do find that fatigue is quite a major symptom and I guess if your valve is sufficiently impaired to the level that mine is, it does have an impact on how you feel on a daily basis.  

To manage this Andrea takes regular leave to make sure she doesn't become too fatigued. 

"I schedule what I call heart health leave into my leave schedule for the year – they're some more regular breaks, so that I don't get overtired and overstressed." 

She also has to sensibly manage her daily activity levels but admits that sometimes that's easier said than done. 

"I'm quite good at giving people advice in my work to 'do a bit, have a rest, do a bit, have a rest'. But I need to follow my own advice! I'm not so good at that."

Frustration of waiting for surgery 

"I think the most frustrating thing for me about this whole thing is that we usually like to get illness or conditions nipped in the bud, and diagnosed and treated as soon as possible. In this case they're saying, 'No we don't want to do that, we're going to wait until you get really bad'. Which isn't the way I would like it."

In that respect, she admits, the surgery weighs on her mind. 

"I do think about it, just because no-one wants to have a major operation. I'll be outside of where I live. I'll have to be there for a little while before I come home. I asked if I could have a TAVI (a less invasive kind of valve repair), but that's not an option for me. That's a shame, because I imagined I could just pop in there, have that done and be up and going within the week. But at this stage it will have to be a big incision and a protracted recovery.  

"More recently, I've been thinking about what sort of valve I would like. Would I like a pig valve or mechanical? I really don't want mechanical because you go on medication for the rest of your days and some people say that you can hear it clicking, so I'm hoping that I can have a tissue valve. I'm OK with that thought, but it just means that they don't last as long of course."

Getting fit before heart surgery 

In the meantime, Andrea plans to make sure she's in the best physical shape possible when the time for surgery eventually comes.  

Initially she considered paying for a private cardiac rehab course to get her into shape, but eventually decided against it. 

"The programme is primarily designed for post-op patients. They thought it would be quite good if I started now, but it's more than a thousand dollars to do it. And my sister, who worked in CCU for many years, said, 'No, you don't need to pay that sort of money – all you need is your sneakers and your legs and off you go'. So my exercise of choice is walking." 

What's more, Andrea says she's got an excellent incentive to stick with her exercise: the likelihood of a faster recovery following the surgery. 

"When I was 34 I had a hysterectomy and at that time I was training as a ballroom dancer. I was super fit when I went into that surgery and I recovered very quickly because I was in good physical shape. So it's something I need to start this year and I need to stick with it. The fitter I am, the faster the recovery will be."

Shared May 2020

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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