31 DAYS OF CYSTIC FIBROSIS
Burkholderia Cepacia Reared Its Ugly Head and Ripped Our Community in Two
Day 13: How the cross-infection policy changed everything
Life was about to change
My first hint that life was changing within the CF community was having to provide sputum samples before going to the Adult CF camp in Queensland in 1993. The assignment of our rooms (which floor) and the bathrooms we could use were determined by the bacteria we cultured.
Then 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.
31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
Next in the 31 Days of Cystic Fibrosis series — Pregnancy Gave Me the Motivation To Defy the Odds
Throughout my pregnancy, the you can’t, you shouldn’t, and you mustn’t brigade were in full force. But I had thrown down the cards fate dealt, and I was determined to be in charge of my narrative.
If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here:
