When heart failure is just the start

In 2008, life was trucking along as usual for Steve: a husband, father, and long-serving customs officer. Little did he know, the course of his life was about to change. This is his story as told to the Heart Foundation in an interview.

“Up until 2008, I was fine. Maybe carrying a little too much weight, but nothing alarming. And then in March 2008, I had a Medical prior to going to Outward Bound as part of a Management team-building exercise, and that was all good.

“By the time I got to Outward Bound, I had a chest infection but I struggled through with all the running and jumping off the wharf into the ocean, and all the crazy things they do down there.

“Then, around August, I was at a meeting and I felt really dizzy and thought I was going to collapse, so I managed to sneak out before making a total fool of myself. I went to the local doctor at the airport where I worked, he listened to my heart and it didn’t sound right. He did an ECG and it wasn’t good at all. He immediately put me on beta blockers.

“My GP then referred me to a cardiologist and I went through the usual raft of tests, prodding and poking, and ended up being diagnosed with cardiomyopathy. We have a history of that in our family – I have four first or second cousins I know about who had died of it in their 40s.

“I also found out I had atrial fibrillation (AF) and didn’t really realise what that meant for me, until later.”

Symptoms intensify

“I had shortness of breath and an inability to do any real exercise. In the beginning it wasn’t too bad – I carried on working and was on a whole cocktail of different medicines. That carried on for two years, with regular cardiologist appointments.

“In the beginning of 2012 I really started to head downhill. My pulse rate was about 40 and I felt absolutely horrible. So I went to the cardiologist who checked me out once again. It was certainly heart failure that had made its presence felt.

“This was on a Tuesday that I went. On the Friday night, I’d just got home from work and I felt somewhat better than earlier in the week. The cardiologist phoned up and said, ‘I’ve made you an appointment at the cardiac ward at Middlemore.’ I said, ‘Oh okay, do you want me to go in on Monday?’ He said, ‘No, now.’

“So I spent a week there and at the end of that week they gave me an ICD (Implantable cardiac defibrillator). So this was really good, it kept my pulse at 70 (beats per minute). I felt a million dollars – I felt better than I had in years.”

Worse was to come

“A while before I got the ICD, I’d had a TIA (transient ischaemic attack) mini stroke.

“The stroke affected my speech just temporarily. It was a warning, and they got me onto some sort of blood thinner. At that stage I was not particularly concerned about it, because they couldn’t find any sign of damage.

“But around five months after getting the ICD, I woke up one Sunday morning, paralysed down my right-hand side. I’d just had a massive stroke. My voice had gone. I sounded a bit like Chewbacca trying to speak.

“So I had an ambulance ride to hospital. I started to feel better but then I had another stroke and went totally downhill.

“That’s when the doctors got my wife onside and said, ‘You’d better be prepared for the worst’ – but they didn’t tell me that. I was in a state of shock, I think.

“I had a week in the ward. By the end of that, I could walk and had limited use of my arm, and a vocabulary of about 50 words I could say. It was very hard for everyone.

“I had a couple of weeks in the rehab unit at Middlemore and another four months at home, with regular physical and speech therapy to try and get me speaking again. It was a bit of a major, and easily the worst thing that’s ever happened to me: the most debilitating.

“I still struggle talking. I can’t talk in front of a crowd, which is sad because I was a trainer (at NZ Customs) and was really, really comfortable in front of all sorts of people.”

Stroke was AF-related

“The stroke was caused by an atrial flutter that caused clots to form, which went straight to my brain. The clot blocked a vein that caused part of the brain to die and left me with a walnut-sized area of dead tissue. It was a heart attack of the brain, if you like...

“After months of recovery, I went back to work, initially part-time, but I wasn’t really fit for operational duty so I was more heavily involved with project and management work. The blood thinners seemed to be working okay.

 “But in 2013, my good old heart decided to give me another clot. This time it went south and ended up blocking a renal artery in my right-hand kidney. That was a really, really intense pain.

“So once more, another ambulance trip and this time they filled me up with morphine and it took about four days to actually diagnose what had happened. It was a similar pain to getting kidney stones. They said my right-hand kidney was dead but it seems to have come back to life a bit.”

The ICD makes its presence felt

“So, life went on, and my ICD behaved itself. I didn’t get any shocks. And then, one day in June 2014, I woke up in the middle of the night feeling like rubbish. I couldn’t work it out. I thought it was something I ate and went back to sleep.

“Then at 5.30am in the morning, this alarm sounded and my wife and I both woke up and said, ‘What’s that?’ And it was my ICD in my chest sending out an audible alarm. It was really weird. It was really noisy, and coming from me.

“So I went to the pacemaker clinic, they Bluetoothed my device, the machine did a print-out, and they said, ‘Oh you had a shock last night.’ And I said, ‘Did I? I didn’t realise.’

“Turns out, I’d had tachycardia where my pulse rate jumped to over 200 beats a minute, and the ICD shocked me back into normal rhythm.

“So about two weeks later, in July 2014, I had another shock. This time, unfortunately, I was awake, and that was not nice at all.

“It wasn’t the shock, although that hurt, it was the lead-up to it: the tachycardia, the difficulty in breathing, the dizziness, the vision getting closed up, it was really unpleasant and utterly terrifying. And over the next few months, I would’ve had close to 20 shocks for the same reason.”

The cardiac arrests

“Most of the shocks shocked me back before I actually arrested, but I did have three actual arrests.

“The first arrest, I was in hospital and I could feel it coming on. The two nurses could see I was all fired up and they said, ‘Calm down, it’s alright’ – and then I blacked out. When I came to, there were three doctors and seven nurses in the room. They had the pads on me and they had just removed the pump for breathing. Apparently one of the nurses was on top of me, straddling me, doing CPR.

“So that was my first actual arrest. The second and third one were at home, and the third was the worst. That was while getting out of the shower one day.

“I screamed out to my wife, I could feel myself going and then – with my back up against the wall – I slid down the wall. Afterwards, when I came to, I found out it had taken three shocks to get my heart going again. I’d been lying there on the bathroom floor, dripping wet, stark naked, totally non-responsive. No pulse, no breathing. My eldest son was there and he was just about to start CPR when the first shock got me going.

“So after all of these shocks, I was affected immensely. And I developed quite severe panic attacks and depression. It really screwed with my head, to the point where my body would mimic the onset of tachycardia, I’d feel all of these symptoms and yet my pulse rate didn’t change.

“That was very traumatic. At that time I was in hospital for several weeks and I was constantly checking my monitor and my pulse every 30 seconds. I was so paranoid that I was aware of anything even slightly out of the norm. And so the psychologist came and saw me and gave me some anti-anxiety pills – to calm me down and get me back on track.

“At the time I was on 22 tablets a day. And my risk of more arrests had got so bad that they had me on a drug that had to be taken every eight hours, and if I was half-an-hour late that would cause me probably to have another bout of AF.

“So I was really very sick… I had trouble walking about 20 metres. I was a cot case.”

One last hope

“At Auckland Hospital, after my first cardiac arrest, they did some further analysis of me and placed me onto the heart transplant list.

“I knew that a transplant was always going to be a possibility, so it did not really concern me that much. What concerned me was if I they didn’t accept me – that would’ve been a death sentence.

“One of my cousins was on the list when he died. And I had a second cousin, who in 2014 had had his transplant and died in Intensive Care four days later. So I was really under no illusions of the risks involved.

“My family all knew that. So it was a really tough time for them – less so for me because I had gotten used to it, to the point where I thought there are worse ways to die, really. The thought of having something terminal takes some getting used to, and you go through the whole grief cycle.

“The time on the list was hard for all of us. I was very sick and we had our phones with us 24/7. Whenever it rang there was that hope that this would be ‘the call’.

“Then one morning in November, 2014, about 5am, the phone went and it was Helen, one of the people from the Transplant team. And she said, ‘We think we might have a heart for you. Can you be in Auckland in an hour?’ And we said, ‘Yes!’

“It was the most surreal day because up until that moment. I had been on the list for three months, which was not that long to wait – I knew people who had been waiting over a year – but at the time it seemed to go on forever.

“So, the kids (two adult sons) and my wife and I met my sister and brother-in-law in Auckland at about 6am, and there was a lot going on with the arrangements to get the donor’s heart and the time it took to get me prepped. By the time I went into surgery, it was about 10am.

“Saying goodbye to the family, it was really hard. Up until that moment, it had been really light-hearted, lots of laughter but we all knew the risks when we said goodbye in the corridor outside the theatre. They all spent the day at Auckland Hospital waiting for news, and I spent a day sleeping peacefully while a team of highly-trained people worked their magic.

“The surgery took about six to seven hours, I guess, and then I went into Intensive Care and they woke me up at 6am the next morning. I spent six days in Intensive Care and can’t remember much about it, I was fairly drugged up. It didn’t always go plain sailing, but it was alright.”

Recovery from heart transplant

“There were one or two funny moments. Everyone who has a transplant like that, for some reason, gets hallucinations. For me, those dark squares on the curtains at Auckland Hospital had transformed into moths. I’d be talking to my wife and all of a sudden moths would be flying all about the room. I was also having in-depth conversations with people who weren’t there.

“The psych nurse from Hearty Towers came to see me and asked if I’d seen anything strange? I said, ‘Only these moths.’ She mentioned afterwards that moths were okay, much better than spiders. Apparently butterflies are fairly common.

“I spent six days there, then another week in a surgical ward before we went into Hearty Towers for about five weeks’ rehab. My strength was really poor, my muscles had wasted through non-exercise, and also the anti-rejection drugs had really downed my immune system.

“So one day, about four weeks after the surgery, they gave me my regular x-ray and they could see a little white mark on my lungs. A week later when they repeated it, it was the size of a $2 coin. It was obviously growing, so I went back into hospital and they gave me a biopsy of the lung which I could watch live on the cat-scan. Fascinating!  

“It turned out I had picked up a fungal infection called invasive aspergillus – like a little garden of mushrooms growing in my lungs. There’s a really high death rate because it can get into the blood and can go to the brain where it destroys the brain. Doctors administered a six-month course of high-powered drugs to get rid of it.

“With the transplant, I was really lucky. I received the heart of a young man and it’s been a really good heart.”

Tachycardia not completely banished

“I’ve had tachycardia once since the transplant, which meant I had to go to hospital, but it has not been too bad. I’ve been really lucky. I think every heart patient gets some problems like this to one degree or another because the nerves to the heart have had to be cut, so with things like exercise I’ve got to warm up and warm down, because the heart will not react quickly when I need it to pump faster.

“If it was you and you suddenly sprinted, the heart – within a really short time – would start pumping blood vigorously to feed the muscles. It’s a bit like Mitre Peak, a big jump, but mine is a bit more like Rangitoto, a gentle climb to the top.

“The check-ups showed everything was on track. I started off by having biopsies of my new heart every week, where they went in through the neck. But then after a year, it went from every week to every fortnight to every month, to a year, until I would not have to have another biopsy unless I experience some sort of rejection symptoms.

“I went back to work part-time, three months to the day after my op, initially part-time for two weeks, and then fulltime since then. I’m better now than I ever have been.”

Life post-transplant

“I go to the gym, and though I do a desk job, there’s a fair bit of walking and a fair bit of travel which can be tiring but is not too much of a problem.

“I’ve got to watch what I eat, and stick to the diet recommended for those with diminished immunity. I do not have anything like cold chicken as there’d be a high risk of infection. I am very conscious of the risk of bacteria and maintain hygiene.

“My handwriting was affected by my stroke. When I was recovering I concentrated on speech and typing – so now I can’t write as I used to and there was a pronounced dyslexia earlier on. But slowly I’ve regained my right-side strength again.

“My voice is affected. I’m no longer good at standing up in front of everyone. My confidence has gone, so I’m more now on the strategic side of planning and negotiating.

“But, with the new heart, the risk of stroke is reduced. Recent angiograms showed no blockages, no clots. I’m on aspirin, one a day. As far as the heart is concerned, I’m probably in safer hands than anyone I know. Because the doctors look after me.

“The issue for me is kidneys. Kidney failure is a very real risk. Other side-effects are tremors – I suffered from that earlier on, but now that’s gone.”

Relief all-round

“It’s difficult to remember before I got this heart, because I was so sick and I think the brain is really good at shutting those awful memories out. But yeah, it’s been an interesting trip. I wrote my own funeral, which was quite a good thing to do. In the end, when I read it through I thought ‘damn, I would really like to be there, sounds like a good party to me’.

“The impact on the family has been huge. The number of times my wife got the phone call to get into hospital now – times that doctors took her to one side to say things were touch and go. They (wife and kids) were more affected by the whole thing than me. They saw me dead – that can’t be easy.

“It’s been tough on them, but has brought us closer.”

What I didn’t see coming

“I guess the big surprise after the new heart was the rock star status. You mention that you have had a heart transplant and people look at you differently.

“Though what affected me most was managing to figure out who my donor was. New Zealand is a small country and it was pretty easy to work it out.

“I regret knowing. It makes it more personal and makes the suffering of the donor’s family so much more real. I am forever grateful to the donor’s family who made a selfless decision to save the life of a stranger at a time of intense trauma and grief.”

Just some of the lessons from the journey

Speak with family about organ donation: “The main thing I want to stress is that it’s so important for everyone to talk to their family about their wishes, should they become braindead. Because if their body is okay, the family will be approached by the Transplant co-ordinators. It is entirely over to the next of kin to make the decision of whether to donate or not. In New Zealand and Australia, it’s still the decision of the family.”

Laugh it out: “I think if it wasn’t for humour, I would’ve lost my mind.”

Partners bear the load: “Spouses - they’re used to living life on the edge, waiting for the phone calls. Afterwards they crash and burn, my wife got very sick afterwards.”

Heart disease is not just physical: “Watch your mental health, it really screws with your head. Depression is very real. For me, there was a bit of post-traumatic stress disorder that came with it. It is that whole dealing with your imminent death. I still suffer from panic attacks even more than two years after my surgery which can be debilitating but I’m learning to deal with it.”

Survival is key: “The average life expectancy of a heart transplant patient is 14 years. We have a 10% chance of not making it through the first week. Those are good odds. Without it, we would have a 100% chance of not making it at all. However, I have met people who are 25 – 30 years post-transplant and are still active. Those people are inspirational!”

 

Shared April 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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2 Comments

  • Lisa 31 January 2018

    Wow, incredible story!  Great share.

  • Joanne 19 December 2017

    Thanks for sharing this story in so much detail. Much appreciated.