When death pokes you in the ribs

As a rule I don’t respond to No Caller ID. But for some reason that afternoon I did. I immediately regretted doing so. It’s very serious, said a foreign sounding voice. Your heart is only working at 25-30% efficiency. You need to come in immediately for a scan. We’re going to put you on four different medications. You’ll need to take these for the rest of your life. Do you drink? You must stop right away. You mustn’t touch alcohol ever again. The call lasted exactly 6 minutes and 52 seconds.  

It’s no great secret that we all know that we’re going to die. That we carry with us a death sentence. It’s said that this degree of self-awareness is one of the things that makes us human, that separates us from dogs and cats and mongooses and elephants and fleas. We are all aware that we have a finite lifespan. But until it smacks us in the mouth this knowledge is something that most of us tend to keep in cold storage as we go about the business of living. We shop. We eat. We work. We play. We marry. We divorce. We clean our teeth. We do the large and small things that make up a lifetime. Things that would probably be impossible to do if we just sat in a corner somewhere fretting about dying.

But all of a sudden that’s exactly what I was doing. A stranger had just phoned me and told me that death was eminently more imminent that it had been less than seven minutes earlier. He’d also told me that I wasn’t allowed to open the bottle of red that I’d bought that morning for a little companionship. I needed to talk. I needed to vent. So I called my mother and then I called my sister.

We’ve all heard of the placebo effect. But what I hadn’t heard of until I Googled it was its opposite: the nocebo effect. It’s a Pavlovian thing. Tell somebody they’ve got something wrong with them and there’s a fairly good chance that they soon will have. When I awoke the next morning I was suddenly very aware of the existence of my heart as I never before had been. That it was a fist-sized muscle buried away in my chest pumping away as if my life depended on it. Every minor twinge, every minuscule change in heart-rate was magnified a thousand times. I found myself occasionally wincing and holding my chest at imagined palpitations. Yes, I told myself, my heart definitely isn’t working properly – so what happens next? I didn’t have to wait too long to find out. 

There were texts – lots of them. A flood of them. And call after call from more No Caller Iders. From my GP – telling me that I’d been prescribed this or that drug. From the cardiology department at the nearest hospital urging me to pay them a visit at my earliest convenience. From someone at the prosaically named Heart Failure Clinic, who wanted to see me as soon as possible. The calls and texts kept on coming. And with them came conflicting emotions. There was definitely gratitude – I was both grateful and impressed that the NHS had kicked into action so efficiently. Although such palpable enthusiasm only served to increase my concerns. Surely they wouldn’t be acting so speedily if it wasn’t serious? And there was fear – without warning the world had suddenly changed. It had grown smaller. Somehow there was less of it than there was a day earlier. I wanted to scream: Leave me alone!! I didn’t ask for this!! I’ve done nothing to deserve this!! Stop picking on me!!

I also began assembling a mental checklist. I thought about wills. I’d better write one before it’s too late. I considered changing my lifestyle. My diet. The amount of exercise. Most of all I thought about my daughter. Twenty-one. Was I supposed to reveal all about my misfiring organ? What would be the point in worrying her and risking disrupting her studies? But what if I didn’t tell her and suddenly dropped dead? Would she think that her late father was a selfish bastard for keeping her in the dark? I considered making some kind of grandiose Facebook announcement: Before I pop my clogs in a week or so I’d like to apologise to all the people I’ve hurt or offended. I wasn’t such a bad sort. Honestly.

***

Within days I found myself lying on a giant piece of tissue paper with a cannula hanging from a vein. Naked from the waist up, I was wedged into a giant tube and radiation was fired at me. We’re going to put some dye into you that will show up under X-ray, an impossibly youthful technician explained. Most people say that they suddenly feel very hot for a few seconds. I must warn you that there is a chance of extreme reaction but this only occurs in about 1% of cases. While he retreated to the safety of a lead-lined observation room I lay stock still and felt the liquid enter my body. It crept up my arm like a line of marching ants before disappearing into my chest cavity. I suddenly felt icy cold and there was a strange taste in my mouth – somewhere between a cheap curry and that copper taste you get on your fingers after playing the penny arcade. I felt the need to vomit. 

Next port of call was the Heart Failure Clinic. Why do you have to call it that? I asked an engaging heart specialist named Becky. Can’t you call it the Heart Treatment Clinic or the Healthy Heart Clinic? I was given a weak smile and some leaflets about heart disease for homework as she frowned into a computer screen. 

By now things were happening fast. The calls intensified – sometimes twice, three times a day. Two different doctors asking me endless questions. Two heart specialists. A heart surgeon. It quickly reached the stage in which I dreaded my phone ringing. There were more texts. A tsunami of emails informing me on a regular basis that my ‘health record had been updated’. 

I started to feel ill. I’d been taking two new medications for about four days and I was overwhelmed by exhaustion. On a number of occasions I slept for 20 hours at a stretch. Prior to this I’d been completely asymptomatic. You’d never have known that my heart wasn’t ejecting blood in sufficient quantities. Now, if I did manage to get out of bed it was usually to rush to the toilet. The universe was really sticking it to me – diarrhoea was but one of many unpleasant side-effects of the drugs I had been imbibing.

Two weeks of calls and texts and emails and exhaustion and the trots did nothing to improve the air of despondency that hung around me in a visible cloud. With the end of my life suddenly a very real possibility I began to reflect on what I’d actually done with it. Nothing really. A failed marriage to a woman I should never have married. A handful of stupid, poorly-written pamphlets with my name on their spines. All the things I could have done but didn’t. All the places I should have visited but never did. The people I’ve been mean to, intentionally or otherwise. And my daughter – probably the only pinprick of light in 62 years of murky grey. And then I had an epiphany.

It was the evening before I was due to go into hospital to have a stent fitted. I had been informed that my malfunctioning organ was undoubtedly due to the cavalier manner in which I had treated it. I had smoked and drank far too much and managed to clog up my arteries with grease. A stent was essential to my survival. Up until this moment I had been taking everything that had been thrown at me with barely a whimper. If they said: take this, I took it. If they said do this, I did it. But all of a sudden I stopped and thought for a moment.

What, I asked myself, would be my advice to a friend if they were in my position? What would I tell them to do? The answer to this question was research, research, research. Don’t rely on others, I would have said. Don’t take what they tell you as gospel until you’ve found out about it for yourself. And stop shoving stuff down your throat until you know exactly what it is doing to you. So I sat down and began some heavy-duty Googling.

The next morning I was sitting on a hospital bed wearing a paper nappy. As this was eased to one side and I was relieved of my pubic hair I caused a minor fracas by asking to speak to the heart surgeon before I would agree to having the stent fitted. There was a lot of whispering in the ward before the surgeon in question reluctantly appeared and impatiently thrust a consent form in my direction. I told him that before signing I needed to be convinced that the procedure was really necessary. I insisted that my research indicated few tangible differences between those fitted with a stent and those without. He frowned and issued the type of monologue that a teacher might offer a naughty schoolboy.

I was wheeled into an operating theatre and another cannula was inserted into a vein. Six or seven doctors, nurses and/or surgeons crowded around me as I did quite possibly the bravest thing that I have ever done in my entire life and refused the offer of a sedative. I was determined to stay as alert as possible for whatever was about to happen next. A screen hovered above me which enabled me to finally get a good look at the object that had been causing me all this misery. 

Onscreen my heart looked grey and unremarkable. A large chunky vein was connected to its pulsating mass. It looked a little like the face-hugger that had attached itself to John Hurt’s boat race all those years ago. It was at this point that the room fell silent and I looked on as the heart surgeon I had earlier spoken to conspiratorially beckoned his colleagues toward him. There was much whispering and puzzled expressions. There was a lot of leaning into screen and noses pressed against glass. Finally, the heart surgeon turned to me and announced: There’s no evidence of significant heart disease or blocked arteries. We won’t be fitting a stent… I’ll be writing to you about it.’

It took three or four days for the letter to arrive. And it did indeed confirm that my malfunctioning organ was not the result of any kind of party lifestyle. It was something a whole lot weirder: apparently I am a freak.

Most people, it seems, are born with two major coronary arteries. Their job is to furnish the heart with a healthy supply of the red stuff so that the rest of the body is adequately supplied with O2. In my case I appear to have been born with only one artery. I don’t have a left coronary artery and never have done. It’s a rare condition that affects only 1 in 300,000 people. Moreover, 90% of those born with the affliction usually die within the first year. In my case, so the letter explained, my right coronary artery seems to have kicked into overdrive and grown to several times its normal size in order to compensate for being an only child. Even so, it’s only been able to supply roughly 30% of a normal person’s needs. Nevertheless, I’m 62 and still hanging on – so it’s safe to say that it’s been doing a fair to middling job so far.

It goes without saying that it took me a while to process this information. I found myself trying to retrace my steps through life – had there ever been anything to indicate a problem with my ticker? Not really. I was never particularly sporty but not for any physical reason. I’d never had a heart attack or even minor palpitations. In fact, I’d been perfectly OK until they started dishing out all these meds that were supposed to make me feel better.

And this was the first thing I addressed. How many people have you come across with my condition? I asked Becky the heart specialist. None, came the response. So how do you know that all these things you’re giving me are not doing more harm than good? There was silence for a few moments as she considered my words. I see your point, she said finally. 

I went into a long spiel about there being no one-size-fits-all treatment for my condition. That I would prefer to listen to what my body is telling me rather than follow the advice of arbitrary text books. That I didn’t actually have heart failure (it was somehow particularly important for my morale that I no longer had to attend the Heart Failure Clinic). That from my body’s perspective my heart was completely normal. She may have been humouring a condemned man desperately clutching at straws but Becky quietly agreed with everything I said.

That conversation was a month ago. Since then I’ve stopped taking the meds that had been making me feel so ill and I’m back feeling how I did before the hospital discovered that I was on the verge of death. Nevertheless, a whole year of my life has been stolen by these substances. The texts and the phone calls and the hospital scans and the endless blood tests may have slightly abated but I still tend to flinch when my phone rings. I’ve done further research on my condition and discovered that the oldest female survivor is 88 and the oldest male is 74. The clock, therefore, is ticking – even if my heart is not.

In December I am scheduled to have a heart MRI in London. This, apparently, is the de facto standard heart scan. They are doing this to determine once and for all the damage that my heart has sustained during a lifetime of blood starvation. Everything I’ve read seems to suggest that when this is over I will have a decision to make: will I allow them to cut me open or not?

Your condition is so rare that there’ll probably be a lot of doctors who’ll want to have a poke around… somebody called a ‘heart scientist’ recently told me during an off-the-record chat. I wasn’t sure if he was joking or not but what I do know is that immediate heart surgery is usually recommended for somebody with my condition.

I want to live. We all want to live. However, the big question looming over me is do I want to live enough to allow my chest to be sliced open, my ribs broken and that life-sustaining piece of meat to be fiddled with by the fingers of a stranger? Right now I’m erring on the side of no. 

As this decision awaits me I’m also forced to reconsider my life. To reflect on how lucky I have been to squeeze six decades of activity out of a life that could and should have been over before it even began. To have had the opportunity to experience those major and minor things that we all take for granted. More importantly, to decide how not to waste whatever time I have left on planet earth. How to live until I die.