Day 14: The statistics said I would die soon after giving birth Pregnancy for a woman with Cystic Fibrosis was considered a massive risk in 1995. There was little data about outcomes both during pregnancy and after birth — and it wasn’t positive. When I accidentally-on-purpose fell pregnant, it changed the dynamics of my life. Now I had a reason 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. The not-so-special specialist My pregnancy was mostly uneventful, and at 33 weeks, my not-so-special specialist obstetrician admitted me to hospital for bed rest and extra physio. Once on the hospital ward, a different version of events unfollowed. The bed rest was plentiful. The physio — lacking. There was one physiotherapist trained to do the airway clearance I required. I could only access her services for ½ an hour, twice a day. This fell short of normal requirements — so the term extra physio was a stretch. Then my not-so-special specialist stopped by on ward rounds. Immediately he started to lecture me. “I do not believe that women with CF, can go through normal delivery. Nor will I be letting you go to term. At 36 weeks, you will undergo a planned C-section. You’ll stay in the hospital until then.” “I don’t think so,” I snapped right back, but he ignored me and proceeded on his rounds. That was okay — I was well versed in the art of ignoring instructions. Nor did I have any interest in the nonsense he was sprouting. So I promptly discharged myself. I went on to deliver my son naturally, and without any intervention except paracetamol for pain relief. And I walked out of the delivery room & up to the ward — because I am CF Strong. 31 Days of Cystic Fibrosis Bonus Fact A few days after Jarryn was born, my not-so-special specialist bounced in. He was clearly not-so-good at reading medical charts and was full of assumptions. Namely that I had returned to the hospital because I couldn't cope at home. “I’ve pleased you’ve come back, it’s not easy to admit you’re wrong and need help,” he said. “When would you like to book in your C-section?” His delight faded when he found himself on the wrong end of a lecture detailing exactly what women with CF can achieve when they set their mind to it.
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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. |