Survival is a Team Effort

​Day 26: I had one job. All I had to do was keep breathing

Photo Credit: Grant Parsons

My decision to stay at home meant a team of people worked together to keep me alive.
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Mum was chauffeuring me to multiple appointments each week.
Grant prepared food and kept my various medical equipment sterile. In the last few weeks, he took on the task of sorting out my IV medications and pre-preparing them for me.

Dale, my homecare worker from CFWA, came twice a week to take care of light housework and assist with physio treatments. John, my homecare nurse from CFWA, came once a week to change the dressing on my port.
Physio staff from both hospitals compiled exercise and muscle strengthening programs for me — which I call “pilates in bed”. Jamie did my lung function at Charlie’s clinic until it dropped so low that measurement was pointless. (My last official measurement indicated less than 10% of my lungs were working — that’s less than a can of Coke.)
Paul kept an eye on my calorie intake and weight loss, while Dr. Joey kept an eye on my blood sugar levels.
Sue looked after my various prescriptions and arranged my weekly tub of supplies, full of syringes, saline, alcohol wipes, etc., ready for Mum to exchange an empty tub for a fully stocked one. Sue would also take blood from my infusaport, and collect sputum samples to save me the walk to Path West.
Uncle Gerry saw me weekly and would liaise with Dr. Mike to keep Royal Perth updated with my status (important for your ranking on the transplant list.)

Behind the scenes were people I never saw.
The pharmacist checking my various medications to make sure there were no contradictions. The Pathology staff who checked all my various samples. Along with the various researchers over the world who developed new medications and technologies that had gotten me to this point (the new improved enzymes, ciprofloxacin, azithromycin, and Pulmozyme).

I had one job
All I had to do was keep breathing. It may seem easy, but the effort required to lounge around in bed all day and continue to breathe caused me to lose ½ kg a week despite my calorie intake being three times over the daily recommendation.
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I was clinging to life by my fingernails.

Next in the 31 Days of Cystic Fibrosis series - A Stranger I Will Never Know Saved My Life
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On May 27th, 2011, I spent 10 hours on the operating table.

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