I Was Determined To Keep Working While on the Transplant Waitlist

Day 24: Spoiler Alert — I failed

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.
I cut my hair progressively shorter. I struggled to breathe everywhere, but washing my hair was extremely taxing.

​As 2010 came to an end, I started using oxygen full-time. 

Image Credit: Grant Parsons

Officially, I was in Respiratory Failure Stage 1. 

I wanted to keep working as long as possible because I knew being active would be key to survival.
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 insufficient, my lungs could no longer rid themselves of carbon monoxide. I started to sleep on BiPap. Clinically, my diagnosis was Respiratory Failure Stage 2.

How do you tell your teenage son you are dying?
hat manual provides instructions on how to tackle this conversation?
I didn’t need one. Like me, Jarryn knew the score. He knew CF was winning.
Jarryn had a decision to make. Did he want to stay 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.

I told him he should go. 
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There was nothing he could do to change the outcome, and an offer of donated lungs was not dependent on his physical location.
Maybe, just maybe, there was more than a touch of selfishness in my words. I knew how this would end if an offer for lungs did not eventuate in time, and it wasn’t going to be pretty.
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I didn’t want Jarryn to have to watch me die.

31 Days of Cystic Fibrosis Bonus Fact
When Monkey thought I was walking too fast for her (and I was walking pretty slowly!), she would sit on my oxygen cord to make me wait for her.)

Next in the 31 Days of Cystic Fibrosis series - The Transplant Process Requires Physical and Mental Strength

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.

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