Day 13: How the cross-infection policy changed everything
After that, Burkholderia Cepacia reared its ugly head and ripped our community in two. Some people who cultured Cepacia died within weeks. Others lived. There was no rhyme or reason for the way it affected different people. Then the “guidelines” came into force. There was to be no in-person contact with those who cultured Cepacia. There were to be no negotiations on this guideline. Always one to march to my own beat I choose to ignore the guidelines. I was not giving up on my family. Yes, there was a part of me that was flirting with danger. But this dying business was inevitable, right? At first, the guidelines only affected people with Cepacia — then as other nasty infections cropped up, it affected all people with CF. The guidelines cover hospital protocols, the way CF associations run, and who can attend fundraisers along with policies for best practice for school settings. Cross-infection realities Every year the guidelines tightened until it became normal for a person with CF to grow up isolated from other people with CF. Contact via technology is the only approved method, but it’s not the answer — the loss of deep friendship and connection with people who share the same lived experiences as you has no replacement. COVID-19 has shown the rest of the world how people with CF live their daily lives. For years, people with CF have been aware of every surface we touch, avoiding those who “soldier on” when ill, alert to the sound of every cough and sniffle when we are out in public, and having to cancel social plans with little warning. Because that sniffle you ignored and went to the movies with anyway — it’s an inconvenience to you, for us it could mean two weeks in hospital. Those of us who choose to continue seeing friends with CF do so in the safest possible manner. We meet in the open and dining at outside tables (where possible) has become our normal. Most importantly, when we have active infections, we cancel our plans to meet our CF friends — we are all too aware of the havoc a simple infection can cause. 31 Days of Cystic Fibrosis Bonus Fact My Mum thought the name Cepacia was unusual/pretty and so she hijacked it and used it as the ‘Official’ (or racing) name for one of her horses — except it didn’t trot very fast and the race caller couldn’t pronounce it. She’s probably a trendsetter for those who are going to call their quarantine babies Ko’Rona Vyress. 31 Days of Cystic Fibrosis Extra Bonus Fact There’s a conspiracy theory nut speculating that social distancing was an experiment first performed on the CF Community for the governments of the world to test how it would work before they released COVID-19.
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Day 12: A time when the nurses would join in our shenanigans
At Charlies, for the most part, the nurses would join in our shenanigans. They were either actively participating in them by joining in the water fights or providing the necessary syringes for the shenanigans to commence. On the surface, it might seem irresponsible — but the nursing staff understood two truths. If we were up to no good — we were on the mend. If we were still in our beds, we weren’t well. I think some of them overlooked the shenanigans because they understood what we went through — and that some people with CF spent the majority of their life in the hospital ward. During the second week of a hospital stay, I would often go to work dispensing my midday antibiotics in the staff room, then return to the hospital after work. This display of responsibility was usually paid back by some sort of prank when I returned to the hospital. In later years with cross-infection guidelines firmly in place, the respiratory ward moved to G Block. In G Block, single rooms and shut doors are the norm. A hospital admission became a dreary thing to be endured. The Last Walk I wrote The Last Walk as a nod to the incredible medical staff — who over the years turned a blind eye to shenanigans (or actively participated). Staff who have brought home-cooked meals, or sat with me in the middle of the night simply because they could. It’s also for others with CF, who lived through those wild hospital admissions in the early 90s — who will know that I left out far more than I included because sometimes life is stranger than fiction. 31 Days of Cystic Fibrosis Bonus Fact I once woke up on the balcony pictured above. Tom, found it highly amusing to come into my room while I was sleeping, and wheel my bed — while I still slumbered — up the corridor, past the nurse’s station, and parked me out there in the open. I’m reasonably confident; he didn’t act alone. But he was the only one I caught, and by caught, I mean he hung about to laugh at me.
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Written bySandi Parsons - Cystic Fibrosis Warrior. |