Episode 1 - Dilated Cardiomyopathy
It’s January 1998 and after 34 years of life consisting of a fair amount of sport, the usual student excesses, no more, no less, and a consistently reasonable level of fitness, I find myself out of breath while climbing a single flight of stairs. At first I think this is just a normal chest infection and it’ll go away. But it doesn’t.
So off to my GP I go, expecting to return with a batch of antibiotics and an order to rest. Next stop, I’m in the Cardiac Care unit of Oxford’s John Radcliffe Hospital. After a full battery of tests, the diagnosis is quite clear. Dilated cardiomyopathy and resultant heart failure, fluid accumulation, shortness of breath.
Step one is some powerful diuretics to strip out the excess fluid that is clogging up my lungs. Amazingly, I proceed to pee out 7 litres of fluid over one night. That’s a good way to lose 7 kilos in rapid order, I think. That removes the immediate discomfort, but of course it does nothing to address the underlying issue. My heart is failing, my ejection fraction is measured at 12% (not good), and at present my condition seems to be deteriorating.
I try to pick up cues about how worried I should be by looking at the faces of those charged with my care. The senior doctors seem calm. They’ve seen this before. A couple of the junior doctors, however, are disconcertingly showing signs of considerable concern. The line in many a melodrama is ‘tell it to me straight doctor’. Having been there, I’m not so sure on that one.
Eventually, I find my way to the six bed cardiac critical care ward and the message seems clear. You’re stable, but you’re going to be here for a while. This is serious.
After the initial whirlwind of general surprise, dismay, and confusion I decide it’s time to figure out what I think about all this. There’s no fear, instead I adopt an almost dispassionate third-party view with me as the observer. I guess that’s partly due to my intellectual curiosity as a biological scientist. However much I have invested in the outcome, and of course that is quite a lot, there’s no denying that as an objective exercise this is quite an interesting turn of events. I’m keen to know the physiology and bio-mechanics of what’s going on and I’m keen to know what the medical plan is. Most of all, I’m keen to know if it’s going to work.
The initial talk was of transplant, but as soon as my condition stabilised that was ruled out. Instead it’s going to be drug therapy and a long, long wait for a slow but steady recovery. Frustratingly, however, no one seems to have any idea how slow is slow or how much heart function I should expect to recover.
In the last six months or so, I’ve thought quite a bit about the mental approach I adopted at that time. Particularly after I saw a charity fundraising campaign using the slogan, 'Cancer wasn’t expecting this'. For me there are dangers in that kind of rhetoric, which suggests that disease has some sort of consciousness and can make choices over who it targets. Disease did not single me out. It did not decide that I was somehow worthy of attack. It was nothing personal, and that was important for me as it meant there was nothing to justify any kind of ‘why me?’ anger.
I also see dangers in the kind of ‘I will fight this’ language that suggests that will-power alone can overcome disease. It can’t. You need the right attitude for sure, but you also need the correct medical help. Those who say otherwise are always very selective in the case studies they use to illustrate their point.
So what did my take on it all mean? It was not a passive acceptance that what will be, will be. Far from it. Instead, it was a realisation that a calm, determined, and rational approach was what would give me the best chance of surviving. That’s how I saw it anyway. Accepting that even trying your hardest, you still might lose the battle presents you with its own kind of peace. It frees you from that ‘why me?’ anger, and allows you to focus all your energies within to provide your body with its best chance to accept the medical help on offer and heal.
And heal I did. It took close on 4 years of slow and gradual improvement. It very much fell to me to take charge of my recovery. The medics would never answer the ‘so how much can I do/should I do?’ question. I don’t blame them for that, they clearly had no idea. Nor did I. But I figured there was only one way to find out.
What the medics would say is that my event was probably caused by a viral infection. That prompted me to believe that if your lungs can recover and repair themselves after a bout of flu then my heart ought to be able to repair itself after this. So as a scientist, I set about testing that theory. I designed a programme of gradually increasing exercise levels and followed it meticulously. And I reported back to the medics at my monthly and then later three monthly check-ups.
One thing I was sure of was that using my condition as an excuse to remain inactive was not an option for me. I wasn’t going to give up on my ambitions for an active life and accept being a victim.
So that's my story. Part 1 anyway. By 2002 I was able to run 5k three times a week and I was off all medication. By 2004 I was deemed well enough to need no further monitoring. I have no doubt that my story is unique to me. How anyone reacts to or recovers from such events will be different. So I guess I was lucky. It could all have turned out very differently.