May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.
May 6th – May 10th
31 Days of Cystic Fibrosis. May 6
Hospitalisations AKA Tune-ups
When prevention — the physio, the nebs, and exercise — is not enough to keep infections either at bay or under control, and an infection takes hold, antibiotics are required. Depending on the level of infection, they could be in tablet from, inhaled via nebuliser or intravenously (IV). Before the mid 90’s IV antibiotics required a trip to hospital. Usually for two weeks. Sometimes longer.
In the days before cross-infection reared its ugly head, people with CF would share rooms, and in B Block at Charlies we had a common room. This was a place where we could cook our own food, eat meals together, play board games or watch movies.
For me, the most frustrating thing about having a two week tune-up, is that at some point, the antibiotics would kick in, and I’d start to feel well — but still have to finish the course. In the second week it was common to be allowed a ‘day pass’ and I used mine to return to work, giving myself my own antibiotics at lunchtime in the staff room, returning to the hospital each night.
This photo of me was taken by Sonia Sears, who was my roomie one admission. She was a fabulous and passionate photographer, and this shot is a symbolic representation of “Going Nowhere” although the truth is, hospital food being what it is was we’d often be going on KFC or McDonalds runs – when we couldn’t convince the pizza guys to deliver directly to our rooms that is.
Bonus Fact: Most people with CF sound distinctly different when they cough. My friends and I could identify each other by the sound of our coughing alone.
31 Days of Cystic Fibrosis. May 7
The Last Walk
What happens when you have people with CF, creative nursing staff, and lots of free time?
Shenanigans!
I set my short story, ‘The Last Walk’, in the early 90s. It’s a celebration of the special friendships that people with CF share. The character of Saanvi is a nod to all those fabulous nurses who worked on B12. Not only did they take care of our medical needs, but they also took care of our emotional health, and participated in the shenanigans that made hospitals stays far more lively than they should have been.
50ml syringe water fight anyone?
Truth is way more fascinating than fiction, and I had to leave out far more than I included as I’m not sure anyone who didn’t live through the experience would have believed it!
Photo by Sonia Sears.
Bonus Fact: I once woke up on the balcony pictured. 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.
That’s all I can say about B Block Balconies because what happened on those balconies stays on B Block …
Cross Infection
For me, the first hint that life was changing in the CF community was having to provide sputum samples before going to the Adult CF camp in Queensland. I distinctly remember being amused that Mel and I were ‘not allowed’ to share bathroom facilities as we were both culturing very different bacteria despite the fact that we had been housemates for the few years.Then Burkholderia Cepacia reared its ugly head and ripped our community in two. People culturing Cepacia were not allowed to participate in any official events, and the rest of us were informed that we should have no contact with our segregated friends. Essentially we were told to treat them as if they had Leprosy.I am one of those who did not follow these instructions to the letter. I still saw my friends that had cultured Cepacia, because they were my friends and I wasn’t going to abandon them, but at the same time I wasn’t reckless – we met in the open, we no longer shared food or drink, and most importantly the hugs and kisses goodbye ceased.Cross infection is a minefield. Every year the ‘rules’ seem to tighten and now its normal for a person with CF to grow up isolated from other people with CF. Contact via technology is only the approved method, but it’s not the answer.I can’t say that cross-infection doesn’t exist, because I have friends who cross-infected. On the other hand, I’ve lived with, and dated people with CF. I shared food, drink even physio tables. It wasn’t uncommon for us to drag all our mattresses into the living room and have a slumber party. We had a communal Cotazyme bottle that all who visited dipped into – and I never cross-infected with any of my friends, including those with Cepacia. What I can say is that I don’t believe we have all the answers about cross-infection and what the actual risks are.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.
Happy snaps from the adult CF Camp, Queensland 1993
Pregnancy
I grew up believing that I wasn’t going to grow up. And if I did actually reach an age to be considered an adult, children were certainly out of the question – because people with CF were infertile, or so we were told.
But neither of those things turned out to be true.
In 1995 only a handful of women with Cystic Fibrosis attending my clinic had experienced pregnancy, and there was no conclusive data on outcomes. Despite this, I was confident that pregnancy was something my body could handle.
Everyone had an opinion, and no one had any hesitation to share theirs.
It turned out my intuition that my body could handle a pregnancy was correct. I am so very, very proud that during my pregnancy, the only medication I took included enzymes, vitamins and the occasional panadol.
I had one admission to hospital while I was pregnant. It was under the pretence of having additional physio, due to having had a nasty cold a week before. Once there, I discovered some discrepancies. There was only one physio on staff at King Edward who was trained to give percussion, and while she could come twice a day, I was only allocated 20 minutes of her time. My medical team started pushing hard for me to consider a caesarean. Soon. Very soon.
My suspicions on the nature of my stay were confirmed when my not-so-special specialist, informed me that he did not believe a woman with CF could endure labour.
When we got to the weekend, it turned out that despite being an inpatient, there was no one available to give me physio until the following Monday. So I discharged myself.
Bonus fact: Babies are not fond of being yelled at while in the womb.
Let me explain.
I had Julie on one side of my stomach, murmuring nice things, while Melinda was on the other side, bellowing “Hello Baby!” at the top of her voice.
My entire stomach lurched as my baby tried to get as far away from Melinda as possible, which incidentally was right into Julie’s hands.
Jarryn’s Birth
Being a few weeks early, Jarryn was taken to the special care nursery, and I was sent to a new ward. This new ward had no record that I had been in hospital the week before, or that I was under a high-risk specialist. I asked for the physio who had done my treatments the previous week by name, but instead of paging her, they wrote me up on the board as being a hysterical new mum who was worried about her kegel exercises. (Fortunately, my physio was on the ball and found me!)Two days after giving birth, my not-so-special specialist came to see me. He had no idea I’d spent the weekend at home, or that I’d given birth. He wanted to discuss his plans to ‘book in’ my caesarean. You can imagine my delight as I started to explain to him that I was not under any circumstances having a caesarean. He started to bluster but didn’t have a leg to stand when I pointed out that he should perhaps read my chart.Bonus Fact: I was placed in a room with three mothers who had their babies with them. It was a rather uncomfortable feeling. There were whispered questions from their various visitors asking if my baby had died, or if my baby had been removed from my care. It went on ALL afternoon.
That night, after being woken multiple times by them and their babies, I went downstairs and spent the night with Jarryn in the special care nursery.
When I returned to the ward, I found out I had been evicted from the room. Turns out, the other women had gotten together and complained that my coughing was terribly disruptive to them.
Which meant I got to enjoy a private room for the rest of my stay.
Sandi Parsons, reader, writer and storyteller. 