A Shocking Experience
A rare disease is said to be a common experience for those who have it. A common disease, I have discovered, feels equally rare for someone who is not used to being sick.
In Central Otago, we have a high prevalence of heart disease. We have a large population of retired people. Many of them have sold farms in Southland or South Otago, and left to come up here. They move to our drier climate as soon as they don’t need the rain to grow grass to feed sheep or cattle. They have eaten mutton and cream all their working lives, but have been reasonably active. At some time after their retirement, they start developing heart problems. Often this takes the form of a major heart attack, which for most of them is unexpected.
A quick glance at the patients’ past histories typically reveals that this is not their first encounter with the health system. Most of them have had hips replaced, hernias repaired, hysterectomies or prostatectomies, tonsils or appendices removed, or are on treatment for high blood pressure or thyroid deficiency. Some have allergies to medicines. I have previously prided myself on having none of these things. I imagined that if I ever had to go into hospital I could impress the junior medical staff, and make their job easier, with my completely clean medical record.
I have been reasonably fit. I am 64 years old. I weigh 105kg. Some of this extra weight, I claim, is muscle, from years of walking, running, biking, skating, skiing, swimming and working on the farm. Most of it, I admit, is fat, from overeating. I like to eat. That has been my only health problem. Nevertheless, I have become convinced that, unless I can find some way of getting taller, which is unlikely, my only way of achieving a more respectable BMI is to eat less food. I have never smoked. A drink when I have one, which is not every day, is almost always just one.
In 2014 I ran two marathons. I had run one before, in 1992, when I entered in the Auckland Marathon. It was the first time runners were allowed over the harbour bridge. Probably motivated by one of my brothers, who told me he had run a marathon in “three hours 75”, I managed to complete the Auckland course in under four hours. The new me, in the 21st century, I am embarrassed to say, was taking well over five hours. My wife waited for me at the finish lines in Rotorua and Queenstown. When I expressed my disappointment at not approaching my earlier mark, she helpfully explained that I was “younger and slimmer then”.
My resting pulse is usually well under 40. I don’t think this on its own is a sign of fitness, but the rate does go down a bit when I have been training for something. I can feel my heart beating when I am lying in bed. Sometimes I would amuse myself, before getting up and facing the day, by taking my pulse.
All this changed on the 1st of December 2016. My heart through the night felt different. I was aware of extra beats. When I took my pulse in the morning, it was completely irregular. The experience of taking my pulse is perfectly described by one of my co-conspirators Glenn Colquhoun in his poem “Heartsounds”:
like a door
in the wind at
My feelings though, as a result of my own “door banging in the wind”, could be better summed up in a rhyme from childhood that kept coming into my head:
A peanut sat on a railroad track.
His heart was all a flutter.
Round the bend came number ten.
TOOT. TOOT. Peanut butter.
My first reaction was one of denial. Palpitations are a symptom for the worried well. They are usually the result of ventricular ectopic beats, which go away when we move about and our hearts speed up. In young fit people, with no history of heart disease, they are harmless. I convinced myself for two or three days, over the weekend, that this was all that was happening. Then I went to Cromwell Medical Centre for an ECG, which appeared to show atrial fibrillation, but with a few P waves. Isla, one of the GPs, agreed to see me. First though she showed my ECG to the four other doctors working there that morning, who all agreed that it was typical atrial fibrillation, or AF, with bits of atrial flutter, making further denial impossible.
Atrial fibrillation is an interesting condition. Which is bad. If you have to go into hospital, try not to have an interesting condition. It will probably be difficult to diagnose and treat, and require long lists of uncomfortable and inconclusive investigations. The American Heart Association guidelines for AF run to more than 120 pages. More useful was a patient information pamphlet at work from the New Zealand Heart Foundation called “Living With Atrial Fibrillation”, which I picked up supposedly for my wife to look at, but read from cover to cover myself, which was helpful. It said about 300,000 New Zealanders have AF; I wanted to go back to being one of the 4.3 million that don’t. The pamphlet listed all the risk factors, starting with the usual suspects – age, obesity, and drinking alcohol.
We didn’t use to worry that much about AF. There are medications to slow it down. Of concern, people with it have five times the risk of stroke, but this can be reduced with anticoagulants. As a profession, we then went through a period, including where I work at Dunstan, of trying to get everybody back into a normal rhythm, for every episode: with Amiodarone, which can damage people’s skin, thyroid, and lungs; or Flecainide, which can precipitate ventricular fibrillation and cardiac arrest; or a shock from a defibrillator. Then, after some major trials showed that these repeated attempts were impairing people’s lifestyle, and didn’t help in the long term, we started being more selective with our interventions.
I decided at an early stage that atrial fibrillation and I were not meant for each other. Isla referred me to the cardiologists in Dunedin Hospital to see if they could restore me to a normal rhythm. She also started me on Dabigatran, to dissolve any clots that might have formed in my heart and might become dislodged by the interventions. Isla asked me what I was like at taking pills twice a day. I said I didn’t know – I hadn’t tried it before. I turned out to be really bad. I kept forgetting when I had not taken the pill, or even if I had. The pills have to be taken with food, and not immediately before lying down. One night, after working the previous night on call, I went to bed straight after my evening meal. I woke with terrible heart burn. We don’t have any antacids or proton pump inhibitors in the house, so I rummaged round the kitchen pantry in the middle of the night to get some baking soda, which relieved it.
Worse, I had become a PERSON ON PILLS. With side-effects. Apart from the nausea and heartburn, I was at risk of bruising or bleeding. This was possibly dangerous. I drove more carefully. I stopped biking. I limited my farming activities so as to avoid injury. I paid one of the neighbours to crutch my sheep. They usually kick me if I don’t hold them properly, which is often, and I end up with bruises all over my legs. I decided that this time the sheep could kick someone else instead.
With Christmas coming up, Isla also referred me in the meantime to my colleague Garry, who has a special interest in cardiology. He is known as “Guru Garry”, except perhaps by actual cardiologists. I asked him if the cardioversion could be done where we both work at Dunstan. He was reluctant, not only because we work together, but because of his concerns about my airway. A few years before, when we were both teaching in the Hokianga, he had been trying to sleep beside me on a marae, but had been kept awake all night by my snoring, and by some disturbing gaps in my breathing pattern. Having experienced my breathing after a few beers at the Omapere pub, he wasn’t willing for our staff to have to manage it after an anaesthetic.
I managed to get an ECHO from Wendy, our visiting echocardiographer, whom I also know well from her involvement with our teaching. She found my heart was going faster than expected, and my left atrium was a bit enlarged, but was optimistic about the chances of going back into a normal rhythm. There is something relaxing about the closeness of physical examination. With Wendy’s arm wrapped around my chest, to get the probe into an ideal position for an apical view, it was easy to talk about my hopes and fears. Many people have commented that it must be difficult for me to be a patient, having become used to being the doctor. It’s not; I have been a doctor for over 40 years; I don’t know what it is like to be an adult who is not a doctor. What I do find difficult is that I am not used to being sick.
The cardiologist, John, after receiving Isla’s referral and Garry’s letter, kindly agreed that I didn’t need to make the six-hour round trip to be seen at a clinic, but could come down when an anaesthetist was available for them to do an electrical cardioversion. An opportunity came up within a few days when there was a cancellation. It was on Friday the 13th – an inauspicious date. “Did somebody die?” my wife asked. “No,” I explained, having been reassured by the cardiology secretary, “somebody went back into a normal rhythm”.
I was supposed to be working the next day. I texted my boss, Lisa, to say I would be late. She gave me a couple of days off instead. I checked the instructions. They did say not to drive or operate heavy machinery for 24 hours after the procedure. There was nothing about not practising medicine, but we thought it best to be on the safe side.
In Dunedin, I was shown into a room with three (other) old men. They looked like the patients at Dunstan. Luckily, none of them was. I changed into my one-size-fits-all gown and shorts. There was someone else’s blood on the floor. The nurse pulled the curtains around our beds to create an ineffective “cone of silence” while she took our histories. Nobody realised I was a doctor, though they must have had their suspicions when John came in and had a detailed technical discussion about my options. The anaesthetic team arrived and obtained my consent. “You don’t want to be awake for this”, they said. “If you want to be anaesthetised, you have to consent.” It felt like an offer I couldn’t refuse. The house surgeon took some more history, picked I was a doctor, examined me, then nervously explained the procedure, including the risk of a further arrhythmia, stroke, or death. It felt strangely reassuring to be so fully informed.
The time came. I was wheeled down in my bed to another room. A robotic voice in the lift intoned the words “going down”, and we did. I have never had an anaesthetic before, and I didn’t enjoy it. There was the claustrophobic feeling of inhaling too much oxygen through a tight-fitting mask, a stinging feeling in my hand from an injection, then trying to stay calm while drifting off into an uncertain future. Defibrillation, they teach us at advanced cardiac life support courses, is not a way of restarting the heart, but of stopping it and waiting for it to restart itself in a normal rhythm. I was determined not to think about it.
I eventually became aware that I was in another different room, with another set of different people, like coming out of a dream without having slept. I have been unconscious once before, after being winded at rugby, and it was a similar feeling. A nurse I hadn’t met before was standing beside me and told me that I had been given a single shock, which had restored my heart to a normal rhythm. The anaesthetists came past and told me they had given me Fentanyl and Propofol – “mother’s milk”, the stuff that had killed Michael Jackson (though, as it happened, they didn’t tell me that bit). My blood pressure had dropped briefly, but there had been no problems with my airway. I was returned to the ward, slowly got dressed, and my wife drove me back to our motel. I wanted to escape before one of Dunedin Hospital’s re-heated meals, which I had heard so much about, arrived for me to eat.
I was warned to expect mild skin discomfort. I got this. If you do want to make someone’s skin uncomfortable, I would recommend sticking a patch to it then passing a strong electric current through it. I also experienced a strange overall muscle stiffness. I don’t know if this was from muscle contraction associated with the shock, or from the anaesthetic. I went for a slow careful walk in the gardens to see if I could clear my head. I found it difficult to sleep. The next morning, I woke a few minutes before we had to check out of the motel, with no idea of what time it was. We drove back home. The following afternoon, after another short walk, I lay down for a rest, went to sleep, and was only awoken at 7pm by people arriving for an important meeting. Something funny had happened to my brain that had interrupted the normal rhythms of daily life.
I stopped drinking coffee and alcohol. I tried harder to eat less food. I was worried about exerting myself, so did some research. I was alarmed to find the extent to which physical training increases the risks of AF. People without other forms of heart disease who do more than three hours a week of vigorous physical activity have five times the risk of AF. Overall mortality starts to increase in those who run more than 24km a week, and at longer training distances, and higher speeds, approaches the mortality of those who do no exercise at all. I wasn’t sure what to make of it all, except to wonder why nobody had told me this before. I was reassured to find that AF in the more active group is not usually precipitated by exercise.
It was surprisingly difficult to cut down on physical exertion. Eggs Benedict without coffee, curry without beer, steak without red wine, I supposed I could get used to. But living in Central Otago without enjoying mornings running along the lake, or afternoons biking into the hills, didn’t seem fair. I decided to devote more time to doing it slowly. Instead of stacking all my hay on the day it had been baled, working into the evening, I spread the work over three days. I promised myself more time off for leisurely walks instead of fitting all my mileage into long runs.
I returned to work. I needed some more investigations. I had an exercise test one morning while on the ward, without putting myself back into AF. Next, I had to wear a Holter monitor for 24 hours. This included keeping a diary of my activities during this time, which was the hardest bit. I have never been very good at documentation. I tried to find more noteworthy things to do than sitting reading or watching TV. Any more interesting activities – I had to wear the monitor in bed – were pretty much precluded by the unattractiveness of the leads on my chest attached by wires to a box on my waist.
After about six weeks, to give my heart time to settle down, I had another ECHO. Except my heart hadn’t really settled down. My left atrial size, which had been “a bit” enlarged before in AF, at my normal slower rate had increased from 45 to 47 millimetres. I checked with Wendy if that meant I was more likely to go back into AF. She said it was a certainty.
Then, for a long time, nothing happened. I counted the days. Eight weeks passed, then two months. I seemed to be in sinus rhythm. I didn’t go back to Isla, or Garry, or John, who were probably all leaving it up to each other to follow me up and do anything else that might be required. Except that nothing was required. I asked Garry on the ward if he had any new information. He didn’t. After ten weeks, I emailed John, the cardiologist, who gave some helpful advice. He recommended “watchful waiting”. He described the lifestyle changes I had made as “sensible”. He had “no doubt” I would “revert to AF at some point”. “The question” he wrote “is when”. It is easy to be realistic and honest, which I guess is what I needed, when writing an email.
Reflection, including writing this story, has helped me to put the episode into perspective. My condition was trivial rather than tragic, distracting rather than dangerous, but I still found it quite disruptive to my usual routines. And I am still mourning my loss of perfect health. It was interesting and instructive to see the health system from the other side. My overwhelming impression was of knowledgeable, competent, and caring people, who were happy to help when required. I like to think the experience would be the same for people who are sick and who don’t happen to be doctors.
– by Trevor Lloyd
Trevor was born in rural Southland. He has been a GP and rural hospital doctor in Vanuatu, Central Otago and Northland, and now works at Dunstan Hospital in Clyde. He and his wife, Joan, have three children and live on a small farm near Bannockburn.