The Transplant Process Requires Physical and Mental Strength

Day 25: Staying at Home

​At the start of 2011, things looked pretty grim.
My respiratory team told me I could stay in the hospital until an offer of donated lungs came. Within my CF community, we have a saying; if Sue, our Clinic Nurse Specialist, isn’t paying any attention to you, then there’s nothing to worry about.
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But Sue was giving me a lot of attention.

Photo Credit: Grant Parsons

The unsaid narrative was that my decline had been so quick that no one on my medical team believed I would make it to transplant.
Staying in hospital meant my meals would be delivered, a nurse would do my medications for me, Jamie would do my physio, and the bathroom was two steps away.

It would have been all too easy to lay in the hospital bed and close my eyes.
I did what I had to do to change the narrative.
I went home.

The realities of living at home in respiratory failure
It took me 5 minutes to walk the 20 meters to and from the bathroom, with chairs dotted along the way for me to rest.
I had to turn the oxygen to the highest setting to sit under the shower.
I had to do my own treatments.

The days merged into weeks, then months, as I waited for the call that would change everything.

In May, Grant started prepping all my medications for me to inject while he was at work. Shaking the medicine to mix them had become too taxing. 

I could no longer leave the house on my own.

I thought I had months left in me. 

Everyone else was counting in weeks and days. 

31 Days of Cystic Fibrosis Bonus Fact
At night, I used Bi-Pap (non-invasive ventilation).
Monkey found this treatment somewhat invasive. She couldn’t bear to smell the decay on my breath. So, instead, she would tuck her bum in my armpit and snuggle. It ensured that the steady stream of air emitting from the Bi-Pap mask was well away from her face.

Next in the 31 Days of Cystic Fibrosis series - Survival is a Team Effort
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My decision to stay at home didn't mean I was the sole person responsible for my health. A team of people worked together to keep me alive.

31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
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​If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here: Your Daughter Has Cystic Fibrosis