“I’m not going to lay down and die”

For years Eilidh's breathlessness and chest pain was attributed to asthma, stress and anxiety. When her symptoms got so bad that she had to go to the Emergency Department, she was shocked to learn she had heart failure.

I am 55 years old and in May 2020, after a visit to the after-hours surgery and a transfer to the Emergency Department (ED), I learnt that I had severe heart failure and a left branch bundle block (a problem with the electrical system that stops the heart functioning properly).

I had known there was something wrong for a long time, but I couldn't get a proper diagnosis as I was told constantly that it was asthma and/or stress, or the worst, that I was being over-anxious about my health.

By the time myself, a friend who worked in the health service, and my best friend decided it was time to take matters into our hands, things had progressed from bad to worse.

Symptoms slowly increase

It started with a bit of chest pain and shortness of breath which would happen at the beginning of the day. By the time I got on my bike and headed off to work, it would have gone away. The period before it went away, began to get longer and longer, and stress would make it worse. Having chest pain and shortness of breath tends to make you stress a bit as well. A vicious cycle.  

Then a couple of years ago, I went to Dunedin for a training course, and things stepped up a notch. At this stage I was still smoking, and at this course we had to smoke at the end of a long drive. So off I went in the middle of the night (winter) to have a ciggie and on the way back, I felt I was dying. I could hardly walk, I could hardly breath, and I thought my heart would give out.

When I got back to Christchurch, I was told by my GP that it was asthma and stress again, but at this stage I realised the smoking had to go, and am glad to report that finally, after a few goes at it, it did go. But I continued to have problems.

It was at the stage when I could not get to the end of my drive without stopping a couple of times, and had to strategically plan getting up and going to the kitchen to make a coffee that we decided to get me looked at. I was also waking up in the middle of the night feeling that I was being suffocated. I would also run out of breath trying to talk or when walking around.

It was during the last stages of the lockdown that my friend took me to the after-hours. I could hardly make it from the carpark to the door, and so the nurse asked the covid questions, then they put me in a wheelchair, and got me into an examination room where I had a couple of blood tests, an ECG and an X-ray, and I was told I needed to go to hospital as I very likely was suffering from heart failure.

I ended up in the cardiac ward, and all I could think was, this cannot be true, most of the other people here are way older than me, they must be wrong, or it can't really be that bad. But it was true and it was that bad.

Managing heart failure

Since then, I have been seeing a cardiologist and attending the Heart Function clinic. There I have my medications managed and tests done. 

At my last assessment I had an ejection fraction (EF) of 23%. Not the best really, but somehow I am managing to get around a lot better than before I went in.  

I was started on a combination of cardiac medications. However my ejection fraction did not improve much on that, so the medications were reviewed and changed.

I reduced salt in my diet as much as possible (I can't imagine how I even used so much before!), and because two of my medications increase the amount of potassium in my diet, I am working on reducing that as well. 

At first it was difficult trying to figure out what was left that I could actually have, but now I treat it as a challenge - how can I make this or that meal, with other stuff. I have discovered that strawberries are a surprisingly good replacement for tomato in salads. Wouldn't have known that unless I had to experiment!

I used to work in mental health before I had to stop due to my health, and I have had to apply a lot of the things I used to tell my clients to myself. Trying to see problems as challenges and to look at my strengths rather than the things that aren't working, and to problem solve. This has been surprisingly difficult. Even though I know pretty much what I could be doing to help myself, I often don't do it. I'm a work in progress.

Getting on with life

So. At the age of 55 I am having to deal with a health condition that is not curable, requires daily management, and may eventually kill me. But I am determined that I'm not just going to lay down and die.

I have had to learn to ask for help with stuff and realise I can't just go on like the wonder woman I thought I was.

I am using my time to do things that help me to feel better and are enjoyable – the garden, my personal study and research, art, piano. I also managed to complete the last paper I needed for a diploma I have been working at. I have made the necessary preparations if things get worse - powers of attorney, making sure my will is up to date, and working out some other details. Meanwhile I just get on with it. What else can I do?

CRT device improves symptoms

In January 2021 I had a procedure to implant a CRT, or cardiac resynchronising therapy, device. Similar to a pacemaker, this device monitors my heart and helps it beat more efficiently. This has improved my symptoms almost miraculously. 

I was very nervous, and very dubious about having this done and whether it would make any difference, but it was worth it. I have been able to do short walks and bike rides after a recovery period – something that I haven't been able to do in over a year. 

I've applied for a home alarm and my device is monitored by the CRT team which helps me feel a lot safer when I'm on my own. 

I am waiting to have another echocardiogram to see how my EF is, and hopefully it will be much better.

Shared July 2021

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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