It was the day before I heard Schubert’s dactyls in the gears of my IV pump. I was at home and calling the hospital’s bed manager. A late Wednesday morning, my patience had cracked from days of waiting. Under blue skies the pavements and walls were already overspilling with heat and fatigue, despite it only being May. ‘I know who you are’, the bed manager said. ‘You’re coming in today.’ There had been three discharges on the ward that morning, and I was the third on his list to take their places. In fact, he said, he had been just about to call me.
Three weeks ago, I had gone into hospital for a routine check-up. Depending on how well I am, this is a journey I take every two or three months – across London to a former TB hospital, situated like a skull amidst the whitewashed terraces and luxury cars of the super-rich. It’s an irony-rich environment, and I can’t say I don’t enjoy walking my troubled body through the streets of those who live without friction. But the visits themselves are always anxious. Clinic appointments for chronic illness are like sitting exams, but ones for which you don’t get a certificate and in which you can never do well. A scraped pass is your best result: you haven’t got worse; come back in three months and we’ll try it again.
Or maybe it’s like defending yourself in court. The prosecution compiles data, conducts analyses of tests and trend lines. In defence, you have only your words. A lot hinges on how honestly you describe your symptoms, how you have been feeling and how well you have been looking after yourself. In this upside-down world, it is in your interests to get caught. Yes, your honour, the prosecution’s case is correct; things are as bad as they seem. Please do what you can to make them better. But unlike court, you don’t swear an oath. The only agreement you make is with yourself: the bargain of your long-term health against your immediate future. And the incentives are to be economical with that truth: to try to stay out of hospital, conceal how unwell you really feel, how hard things have become, how little you’ve done to look after yourself. Convince your doctors that you are OK – that the results they are seeing on their screen are a temporary blip, that they don’t signal a worsening of symptoms, that you’re pretty sure that with some more care to your physio and exercise (which you will definitely do, definitely beginning as soon as you get home) – and they will send you home, maybe with some oral medication and a stern word, and no need to be admitted.
This was not one of those times. My test numbers and my scans showed unmistakably that I was not doing well. At my last appointment, I had been prescribed a course of Co-trimoxazole – an antibiotic used in CF cases to treat the infection Burkholderia cepacia – in response to a more productive cough and a drop in my lung function. I was already taking spoonfuls of a revoltingly sticky, foul-tasting anti-fungal medicine called Itraconazole to fight an infection of aspergillus. And that, as well as performing its own ravages, was eliciting in me an allergic response called ABPA (allergic bronchopulmonary aspergillosis) that responded to aspergillus spores by asthmatically tightening and inflaming my airways, making them even harder than usual to clear. And less than a year ago, I had been admitted for a course of IV antibiotics, my first in five years, to try to control a flare-up of my recurring Pseudomonas infection.
None of this seemed to have had much effect. Reviewing the wreckage, my consultant described to me the multifactorial nature of what was happening. The aspergillus infection was bad enough, but my allergic response was creating opportunities for my Pseudomonas as well. Progress meant tackling all three. Summarising the situation to my GP, he noted ‘I think he is heading towards a further course of IV antibiotics but I also feel that poor control of his ABPA is likely to be contributing’. In addition to IV antibiotics, he suggested adding Caspofungin, a relatively new heavy-duty antifungal, as well as a high-intensity blast of hydrocortisone to bring down the inflammation. Both would also be delivered intravenously. In clinic we agreed that, pending the results of some blood tests to check on the state of my infections, I would come onto the ward for at least two weeks of these drugs and some intensive physio. I could already see my days spooling out in an unending attachment to an IV pump.
It was a tough blow. I had avoided hospital for most of my thirties, coming in just once that decade. And now it was only a year since my last admission. Twice in my forties, and I was only forty-one. On the train home I made dark notes to myself on my phone, about the ‘drip drip of slightly bad news’, the ‘unwavering state of deception’ required in the face of shortened life expectancy. ‘Hospitals are where people usually go to do one of two things’, I wrote. ‘I go for neither. [Still] alive, but a little worse. And every time, I pick myself up, consider some lifestyle changes, a little extra treatment, resolve to do better. It’s like New Year’s Day every eight weeks.’ Nothing we’d thrown at the problem in the last year had made a difference, and a sense of inevitability was starting to descend. Once is wobble; twice is pattern.
A few days later, my blood work confirmed that, although the fungal infection was not as bad as feared, I should still come in. I told those who needed to know, and tensed.
Apart from all the other parts, the worst part of a hospital admission is the waiting. Bed space is unpredictable and for patients with CF – who need single occupancy, isolated rooms so we don’t give ourselves exciting new pathogens to deal with – very limited. To add to the complexity, admissions might be required for long-term maintenance reasons, like mine, or for emergencies. Emergencies get to jump the queue. Planning takes place daily, in the narrow window between late morning, when consultants sign patients out for discharge, and early afternoon, when people might be able to leave home in time to arrive at the hospital before the end of the day.
‘So shall I come in, then?’ I asked, wrong-footed. For all the waiting, I still felt unprepared. ‘Yes’, came the reply. ‘Definitely.’
