On Trust

* Pack your Own Patient Advocate

In the late afternoon of Tuesday July 2, 2024, the doctor informed me I had pneumonia and that I needed hospitalised treatment with intravenous antibiotics. He also said he was about to take a week’s leave with his family but that he could book me in to the hospital where he practised. After going home to have a think, and talk it over with my girlfriend, I called for an ambulance to take me to my local public hospital where I have a file going back to 1972. I wanted the familiarity of services I could trust.

D J Johnson (2018) Unsplash

I have lupus (SLE), diagnosed in 1972, and since then have been treated with various drugs that reduce my resistance to infections and increase the uncertainty of life. Since COVID had arrived in Australia in early 2020, I’d successfully avoided infection. At the beginning it was with constant masking while on a cruise to New Zealand in February of that year. I’d accepted the offer from my girlfriend and her sister of a free trip to accompany them. I’d been somewhat reluctant, remembering the heavy drinking, gambling and sexual antics of passengers on a nightmare cruise in my 20s.

Stepping onto the ship’s deck, I wondered how we would fare after the recent news of a COVID-infected ship off Hong Kong. Reassuringly, the ship’s captain had introduced stringent hygiene routines, especially in the dining area, and I avoided the nightclubs and bars. Despite the captain’s infection control efforts, when our ship took off for its next cruise the same day we had disembarked, its return trip to New Zealand had to be aborted only days later and the ship returned filled with sick passengers suffering from COVID. We had, indeed, had a lucky escape.

Just over four years later, my luck had deserted me, despite having built up my trust in up-to-date vaccinations and masking in enclosed spaces.

Fusion Medical Animation (2020) Covid-19 Virus, Unsplash

Soon after arriving in Emergency, I was diagnosed also with COVID and quickly transferred to the ED isolation room for treatment with intravenous antivirals as well. My long-held fear of catching COVID had finally been realised.

The next morning, I was transferred to an isolation ward, still wearing the dressing gown that I’d slept in to keep warm under the thin cotton blankets provided in ED. I had been too delirious to ring for warmer blankets, and this continued in the isolation ward, where nursing staff moved in and out through my hazy awareness. Two days later I was even more isolated after they moved me further from the nurses’ station, as I was no longer on their critical list. I continued to shiver under thin blankets, with fewer nurse visits and my being unable to remember I had a buzzer to ask for help.

Worse was to come.

I have multiple food sensitivities, and I had arrived at hospital without my list of foods to eat and avoid. I have vague memories of attempting to recount my list to busy nursing and/or dietitian staff who seemed impatient I couldn’t give a familiar and simple dietary need such as ‘gluten free’, which was only one of many that I tried to articulate. For breakfast, I had asked for a peeled pear with gluten free cereal. They provided me with green pears, still rock hard 5 days later, together with a plastic knife, making it impossible to peel or cut them. I stored them on the window sill, in vain hope of the power of weak sunlight

Pear, Unsplash

Unbelievably, I was told the kitchen couldn’t provide lactose free milk and they had run out of gluten free breakfast cereal, which was only back on the menu on my fifth day; my last meal before checking out was gluten free cereal that arrived for lunch. At least I felt well enough then to laugh at the irony. During my sojourn in hospital, I’d subsisted on chicken and rice porridge that my girlfriend cooked and brought in for my lunch every day. For infection control, my many inedible meals and unused plastic cutlery had been discarded in specially designated bins. What a waste!

Jon Tyson (2018) Unsplash

I arrived home, wasted myself at an emaciated 9 kilos lighter weight, but healed from my viral and bacterial infections. I set about updating my dietary requirements list and added a printed copy to an updated list of my medications and Warfarin record, folded into the ziplock bag I carry in my backpack. Despite my low level of trust in my body’s ability to be healthy, I felt reassured at last that I had prepared my own trustworthy patient advocate for my next unexpected hospital visit.

Kent Weitkamp (2018) Last Parasail of the day at Castaway Cay, Unsplash

*’Pack Your Own Chute’ was a saying that circulated in the 70s in pop psychology and encounter groups. I only recently learned it was the title of an FBI trainng film, used as ‘a symbol of how to recognize and overcome unrealistic fears. It points out that each individual is responsible for his (sic) behavior.’