I Wasn’t Losing a Battle, I Was Losing the Entire War

Day 23: I put the transplant list on hold to go on holiday

As my transplant workup was nearing completion, my husband and I decided to go on one more overseas trip. My CF team is used to my stubbornness and how I do things in my own way. My transplant team was not so happy — but as I wasn’t officially listed, they didn’t get to buy in on the decision. This holiday would be a last-chance getaway.

Photo Credit: Sandi Parsons

It turned out to be the trip I needed to prepare myself emotionally for transplant.
Heavy rain flooded Koh Samui the night before our arrival, leaving us with only one street to walk up and down. 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.
In Koh Samui, I was a fish out of water. I hadn’t realized how many little crutches I’d been using in my daily routines.

The Electrical Problem
The flooding had impacted the hotel’s electricity — and our room was on the third floor. Each flight of stairs was a struggle.
I was supposed to sleep with oxygen, but the oxygen concentrator I hauled all the way from Australia didn’t want to play ball with the Thai power. It could charge the battery — taking 5 hours to charge the concentrator to run for 45 minutes. But no matter what we tried, the concentrator would not run while plugged into the power.
So I slept propped up on a mound of pillows to help my lungs out by not laying down flat.

Chaweng Beach
On Grant’s 40th birthday, we were walking up Chaweng Beach, heading for a restaurant to have lunch — Grant was carrying my handbag and doing all the talking as I had lost the capacity to walk and talk at the same times months ago. Not only did I have to stop and rest regularly, but at the point where I thought I was coping so well with the walk, two elderly people with walking aids overtook me with ease.
It was the moment that I realized 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.

I Was Ready For the Transplant List
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. The answer revealed that recovery was out of the question. I had a chronic case of silent aspiration. Stomach acid was entering my lungs causing 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%.

31 Days of Cystic Fibrosis 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.
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Simple things have far more meaning post-transplant.

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​If you'd like to read this post in an alternative format, it was also written as Hermit Crab Essay in recipe format.
​ I Was A Fish Out of Water and My Tank Was Dry  was first published in Coffee Times and was the winning entry for the Coffee Challenge 5 (CC5) a life lesson while travelling. 

Next in the 31 Days of Cystic Fibrosis series - I Was Determined To Keep Working While on the Transplant Waitlist

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.

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