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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Written bySandi Parsons - Cystic Fibrosis Warrior. |