‘I’ve been on such a roller coaster’

As someone living with tachycardia, valve disease and an aortic aneurysm, Peter is all too familiar with both the physical and emotional pain that heart disease can cause. This is his story.

I have been wanting to get this off my chest, and on to paper for so long.

I was 49 at the time and very fit. Since 2009, I have been on such a rollercoaster, with more lows than highs.

June 2009. I was on my daily walk/run and had just got to the top of a small hill. I stopped as I suddenly didn’t feel right. No pain. I turned around and walked home.

At home I felt worse, hot and sweaty. I had a shower and then lay down on the couch. Next, my left arm started going numb. I got my wife Carolyn to call the ambulance. They arrived and told me I had a tachycardia, an unusually high heart rate. Mine was 206 beats per minute (bpm).

I was dosed up with morphine and taken to hospital, then A&E. My hospital was, at that time, in a small regional town.

They could not lower my heart rate. I remember after a few hours Carolyn asked the doctor how long can a person sustain this. He never answered her. After five and a half hours my heart rate went down by itself.

I was discharged the following morning, and told I’d need to see a heart specialist in Christchurch.

He said I had heart disease with a bicuspid aortic valve which would require replacement surgery in about 10 years’ time. I said, “Heart disease? That can’t be true!”

Second episode of tachycardia

Two weeks later, I was at the kitchen bench and I collapsed and had to get my young daughter to phone for an ambulance. Taken to the local hospital. Tachycardia with a heart rate of 180 bpm. Again not going down.

I was flown to Christchurch Hospital. Kept in for 11 days whilst I was monitored and underwent a battery of tests. They wanted to get my heart rate back up to 206 bpm for testing.

Lucky me. I had a very rare form of tachycardia called bundle branch re-entrant ventricular tachycardia.

I had an implantable cardioverter defibrillator (ICD) inserted in my chest. This device would shock my heart when the rate got dangerously high.  

Over the next six months my ICD went off quite a few times. It gave a good size shock.

A wild ride to hospital

Then the ICD stopped functioning. Flown again to Christchurch Hospital in a helicopter, but we had to turn back due to the weather. They put me on a small plane. I will never forget that wild ride over the Southern Alps.

They took out my ICD. I then had ablations – a type of procedure that uses a catheter to destroy (ablate) the area inside the heart that is causing the abnormal rhythm. This stopped the tachycardia starting, so they didn’t need to put the ICD back in.

The emotional impact of heart disease

Between June 2009 and the end of 2011, I had 10 trips to hospital with my heart playing up. I was getting very depressed by this stage. It was also really affecting my family. I was self-employed and was really struggling to keep it all together. But I did. I had to.

By the end of 2011 I was still doing my daily 6km walk - no more running! This was to keep myself fit as I knew that in some years to come I might require open heart surgery. In December 2011, I collapsed again after a walk and was attended to by the local GP.

Two days later, Carolyn took me back to the GP as I was not feeling good with my heart, and was feeling dizzy. The GP sent me for a hearing test as she thought I may have had inner ear problems.

My mental state was deteriorating and I was frustrated because of my ongoing health issues. I felt like no-one was listening to me. As it turned out the hearing test was negative. I knew it was my heart.

As 2012 rolled on, I found it harder going on my walks. I was lurching from side to side. I was at rock bottom, feeling really down and helpless. In May, I went to another GP at the same practice for my prescription repeats. I told her that my heart problem was getting worse but I felt like she wasn’t listening to me. I stormed out.

Two weeks later I ended up under the care of the local mental health service because I was so depressed.

Scan reveals valve trouble

In August 2012 I was very unwell, experiencing breathlessness and fatigue. I ended up at my local hospital. They did a CT scan. The doctor showed me the images. My aortic valve was not working properly. Just like I knew.

In September, I went back to Christchurch hospital to see a surgeon to get ready for surgery at some stage.

Early October 2012 I was working on my computer, when I suddenly could not breathe. I phoned Christchurch Hospital, who told me to get the ambulance to the Greymouth Hospital.

I had emergency surgery two days later. Aortic valve replacement with a pig valve, and a pacemaker. When I woke up the next day the surgeon said if I had left it another week I would have died. Being fit, I was back at work within three weeks.

Five years on

Fast forward to 2018, five and a half years since my operation. Until recently I’d been having six monthly check ups for my pacemaker. Now they are three monthly given the length of time my pacemaker has been in.

I still get the odd small tachycardia of maybe one or two seconds. It’s like a kick to the head.

I also have an aortic aneurysm (a bulge in the wall of the aorta, the major blood vessel that carries oxygenated blood to the body). It’s waiting to be repaired when it gets to a certain size. It really gets me down that I am walking around with something that feels like a ticking time bomb in my chest.

When they operate to repair the aneurysm, they will also replace my pig valve with a titanium valve. I have been told it can only be done again by open heart surgery.  I am now 58. I hope my next open heart surgery won’t be too far away.

Life lessons

What have I learnt from this journey?

ASK questions, it’s important that you get answers from the experts. You know your own body better than anyone. I am proof of that. I complained about my GPs to the Health and Disability Commission and it was good to have some of my concerns addressed.

Stay FIT. I know it can be hard, but try and be positive. If you can’t, seek help like I did. Now it’s off my chest, I hope this story will help someone else.

 

Shared November 2018

Where to get help for depression

Depression often goes hand in hand with heart disease. If you are worried about your or someone else's mental health, you can get help at your doctors or local mental health provider. You can find out more at depression.org.nz.

If you need to talk to someone:

• Depression Helpline: 0800 111 757

Lifeline: 0800 543 354 or 09 5222 999 within Auckland (24/7)

Samaritans: 0800 726 666

• Suicide Crisis Helpline: 0508 828 865 (24/7)

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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