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 21st – May 25th
31 Days of Cystic Fibrosis. May 21
Setting Off on the Road to Acceptance
I went home from hospital with an oxygen concentrator and a referral to the transplant team at Royal Perth. At that moment, an official sleep study hadn’t been done to meet the requirements for state-provided oxygen therapy, so the hospital provided me with a concentrator so I could continue to sleep with supplemental oxygen.
Although I had worked hard to maintain my health before, I never worked harder than I did in the second half of 2010. Because with time and effort I had ALWAYS bounced back and this time would be no different. After work I walked around the block, initially taking a stroll with Monkey. Monkey was 16 and her health failing, all too soon I had to walk alone because even my slow pace was too fast for her.
I did mini bouts of physio up to six times a day and nebulisers galore, trying to clear the gunk that was clogging my lungs. This extra airway clearance seemed to be working, as my sputum production decreased, but still, my lungs could not breathe.
All the while, I continued working, attending clinics at both Charlies and Royal Perth as well as transplant workup appointments.
Bonus Fact: The transplant team at Royal Perth (now Fiona Stanley) has the official name of Advanced Lung Disease Clinic. I like to joke that this meant that the team themselves were ‘advanced’ in treating Lung Disease, because the alternative wasn’t worth contemplating.
31 Days of Cystic Fibrosis. May 22
In the midst of my transplant workup, Grant and I decided to take a quick
trip to Koh Samui. Once I was officially listed for transplant, I would be limited to the Perth Metro area, so this was a last chance getaway.
It turned out to be the trip I needed to prepare myself emotionally for transplant. Koh Samui experienced heavy flooding right before our arrival, and it meant there was only one street we could walk. I’ve often joked that it was lucky because I was only capable of walking one street. But it’s a truth that hit close to home.
Out of my own environment, it was an eye-opener to realise how much I was struggling to do everyday tasks. Then, on Grant’s 40th birthday, we walking up Chaweng Beach heading for a restaurant to have lunch and not only did I have to stop and rest regularly, but I was also overtaken by two elderly people with walking sticks.
It was the moment that I realised I was out of options. This wasn’t a nasty infection that had lingered way too long. This was my body losing the war against Cystic Fibrosis.
Bonus Fact: I returned from Koh Samui emotionally ready to get listed for transplant. It was fortunate timing, my workup tests for transplant had revealed why my lungs had declined so dramatically and also that recovery was out of the question. I had a chronic case of silent aspiration, meaning stomach acid entering my lungs was the cause of the inflammation that was making it so hard for me to breathe. Both the transplant team and Uncle Gerry agreed, I may survive the actual surgery to correct the silent aspiration, but my chances of making it through the first three weeks post op, sat squarely on 0%.
Extra Bonus Fact: I returned to Chaweng Beach in April 2017, and repeated that walk with new lungs. This time I didn’t need to stop and rest, and I talked while I walked. Simple things have far more meaning post-transplant.
31 Days of Cystic Fibrosis. May 23
Working Towards Transplant
An official placement on the transplant list also meant the acquisition of a shiny new pager that I had to carry everywhere. Working days were a blur of treatments, followed by work, dropping Jarryn at Soccer practice, home for treatments, then back to collect Jarryn before bed. There wasn’t time for anything else.
My hair grew progressively shorter. I struggled to breathe in the shower, and shorter hair was easier to care for. In amongst my daily work routines, I tried to write detailed instructions for my replacement, but these were limited to policy, procedures and standards because I didn’t know how long I could keep working, or when a call might come.
As 2010 came to an end, I started using oxygen full-time. It meant that I was officially smack bang in the middle of Respiratory Failure Stage 1. I wanted to keep working as long as possible because I knew that being active would be a key component if I was to survive. Despite my willpower, in 2011 after only being back at school for just over a week I ended up in hospital.
My stint in Respiratory Failure Stage 1 was short. At night, supplemental oxygen was no longer enough as my lungs could no longer rid themselves of carbon monoxide. I started to sleep on BiPap. Clinically my diagnosis was Respiratory Failure Stage 2, and my medical team told me that if I wanted, I could stay in hospital while I waited for the call.
Bonus Fact: During this time Jarryn had to make a decision. Did he want to stay here in Perth with me, or move to Sydney to live with his Dad? A word from me would have seen him stay. Perhaps a bit of my mother’s parenting rubbed off on me because I reminded him that this was my disease and it was not his job to be my carer. There was nothing he could do to change the outcome, and an offer of donated lungs was not dependant on his physical location. Maybe, just maybe there was more than a touch of selfishness in my words. I knew how this was going to end if an offer for lungs did not eventuate in time, and it wasn’t going to be pretty. I didn’t want Jarryn to have to watch me die.
31 Days of Cystic Fibrosis. May 24
Staying at Home
After four weeks in hospital, I went home. Physically, it would have been easier to stay in hospital, but I knew if I didn’t keep challenging myself, I would go downhill quicker.
The days merged into weeks, then months as I waited for the call that would change everything. I spent my mornings in bed, Bi-pap assisting me to breathe, as I read with Monkey at my side. At mid-day, I’d switch over to the oxygen concentrator with its 20-meter cord, and we’d slowly make our way to the kitchen for brunch. Next, Monkey would stretch out on the bathroom tiles while I showered. After that, we’d head to the lounge-room. Either we’d share the couch, or she’d lay on the floor beside me. This routine was punctuated by attending various medical appointments and visits from Dale, my Cystic Fibrosis WA homecare worker. Each day was physically harder than the last until it was no longer safe for me to drive any distance and my Mum had to chauffeur me to my clinic appointments and the gym.
Bonus Fact: Although the technical term for Bi-Pap is non-invasive ventilation, Monkey found this treatment rather invasive. Even under the best of circumstances, she didn’t like me to breathe near her face. Now, with my ragged breathing sounding not dissimilar to Darth Vader with a head cold, she’d found something she could not tolerate. But it was her duty to ‘look after’ me and she refused to let this get in her way. Her solution, as I lay in bed reading was to snuggle her backside under my armpit, so the steady stream of air emitting from the Bi-Pap mask was well away from her face.
31 Days of Cystic Fibrosis. May 25 (It’s 65 Roses Day today!)
The Mystery of the Sixty-Five Roses
In my days as Library Manager for the Swan Education Resource Centre, inclusivity became a topical buzzword. As I gathered books and other resources for a special section to house together, it quickly became apparent that Cystic Fibrosis was woefully underrepresented in the collection. Next, I searched high and low for books that both explained CF and could be used in an education setting that were available to purchase. Resources were either outdated or Americanised, So I decided to write my own.
The obvious organisation to approach was CFWA. Despite the fact that CFWA wasn’t a publishing house and that I was an unknown and unproven writer who didn’t have an idea let alone a single word written on paper, I walked away from a meeting with an agreement that CFWA would publish my book. It was a journey that would take six years and a new set of lungs to complete.
In May 2011 I didn’t know if I’d live long enough to see this book in print, but I knew that if I died, the project was advanced enough to continue without me.
Bonus Fact: The dedication in The Mystery of the Sixty-Five Roses reads as follows: “Dedicated to Dr Gerard Ryan, MB BS, RRACP (Uncle Gerry) and Sue Morey, OAM, FRCNA (Aunty Sue) for over twenty years of outstanding health care, even when faced with a (sometimes) difficult patient.”
I know they’d both say they were just doing their job, but when “just doing your job” means the difference between people living and dying, a book dedication does not even come close to an adequate way to say thank you.