Yallingup 2017

I’m a firm believer in finding your tribe – that group of people where you are accepted and supported. I’m fortunate in many ways, I have several tribes. My oldest tribe is my Cystic Fibrosis family. There is no one who understands me quite like my CF family. After my transplant, my CF tribe had a subtribe — those of us who’d also undergone a double lung transplant.

Lately I’ve been expanding that subtribe into a tribe all of its own. Most contact between transplant patients occurs in a hospital setting – which is why the WA Branch of Transplant Australia actively offers all of its members opportunities to get together in a variety of social settings, including representing WA at the Australian Transplant Games. So I joined the committee to assist with community engagement, and in particular education within schools.

The most recent social event organised by the committee was the 2017 Getaway at Yallingup, a weekend which caters for both recipients and their family. It kicked off with Welcome get-together with nibbles at Caves House in Yallingup on the Friday evening. This was a chance to mingle, for some to catch up with old friends, and for some like me on their first getaway, to meet new friends.

Saturday was a free day, so Jarryn and I took the opportunity to explore the area. We started with the Ngiligi Cave.

Ngiligi Cave – thanks to the wonderful lungs that I have guardianship of I had no trouble breathing in the depths of the cave

After lunch I put my methodical maze cracking skills to the test in a race to reach all four towers in order before Jarryn did. All was going to plan as I reached Towers 1 and 2 in order and before my boy, however I missed the trick door to Tower 3 and skipped ahead to Tower 4. By the time I backtracked to Tower 3 and missed the trick door multiple times Jarryn had made it to Towers 3 & 4 for the win.

Methodical Maze cracking does not work with trick doors.

Sunday was Game Day in Bunker Bay. I didn’t do so well at Archery … or Petanque. (Let’s face it unless there is a reading challenge at the Transplant Games I’m not likely to attend in the near future). Game Day was followed up by a sit down dinner at Caves House.

Games Day

Never underestimate the importance of spending time with your tribe. It’s a chance to relax, recharge and most importantly to talk to people who understand what you’re going through because they’re walking a shared path.

Book Review: To Take Into The Air My Quiet Breath by Stephanie Gunn / Defying Doomsday Anthology

Favourite Line “Georgie,” she said, “why would God put flowers in our lungs, if it makes it so hard for us to breathe?”

Post-apocalyptic fiction depicts survival in a changed world full of challenges – where survival often depends on being the strongest. Defying Doomsday is a snapshot of what may happen if you were disabled or had chronic health problems before disaster struck and is a reminder that there are different types of strength.

My son has a detailed zombie survival plan. Not only has he scouted a location, he’s also figured out the security measures that need to be put in place – in fact his plan even goes as far as to include a backup location just in case the first fails. His biggest challenge is the need to survive alone without family backup.

As a chronically ill person I have a basic generalised apocalypse plan. It’s not as detailed as my son’s and since my transplant it’s changed. My health needs are more pressing as a transplant patient than they were when I was only dealing with my medical needs for Cystic Fibrosis. Although I had serious complications with my pancreas when I was a child, I have become more pancreatic sufficient as I age – I could make do without Creon if I had to. I’m not allergic to any antibiotics, so I believe a raid on any chemist should see me through the immediate future.

Post-transplant I have more pressing issues. Access to immunosuppressants is both lifesaving and time critical. I know which hospital pharmacy I believe to be the easiest for me to access under a variety of circumstances along with a brutal entry method if required.

Given the thought I’ve put into my survival in a doomsday scenario, Stephanie Gunn’s contribution, “To Take Into The Air My Quiet Breath”  which features twins with Cystic Fibrosis, Eliza who is on the transplant list and Annalee who is post-transplant, was for me the most interesting story in the anthology.

Gunn’s casual mention of raiding neighbouring houses and pharmacies for medicines including immunosuppressants gave me a bit of a chuckle – I know the reality won’t be that easy. At best my local pharmacy carries a single box of Tacro for me to use in an emergency and orders my scripts in as they are needed.

Flus can be deadly to people with Cystic Fibrosis, even more so to people who are post lung transplant, so I thought Gunn’s mention of a flu pandemic having caused the apocalyptic event interesting. Not everyone with Cystic Fibrosis caught the bird or swine flu, or were affected by SARS – but we are included in the most vulnerable group, so this scenario is feasible, but would have been discarded by most other writers who would have dismissed us with a wave of their pen. However, the close contact with the stranger did bother me, as the subsequent lack of infection afterward didn’t sit quite right.

Those two points are my only niggles in Gunn’s short story, which is high praise from me on fictional characters with Cystic Fibrosis.

Other people may wonder if someone with Cystic Fibrosis can survive an apocalyptic event? The answer is simple.


We are tough, stubborn and used to fighting to stay alive. Generally, as a group, we’re tenacious and don’t tend to give up easily. Our lives are challenging to begin with, our survival even in this world of medical marvels not guaranteed – at times we survive due to sheer doggedness alone.

For me, an apocalyptic event would be challenging, but not impossible. I’ve faced worse foes and lived to tell the tales.

And just in case you’re wondering, the other stories in this anthology also get my tick of approval.


You’ll find more of my recommendations for reading about Cystic Fibrosis on my Pintrest Board : Cystic Fibrosis in Print – Books and More

Walking Chaweng Beach, April 2017

At the beginning of my last holiday to Thailand, in 2010, I turned 38. It was a holiday I struggled with both physically and mentally.

Earlier that year, while on holiday in Egypt, I had used the Robber’s Tunnel to climb inside the Great Pyramid of Giza to see the King’s Chamber. It had been a hard physical climb for me, and I’d spent most of it breathless. But once back in the open air, I had regained my breath quickly. My lung function had dropped recently from the 80% capacity I had lived with most of my adult life to 45%.
At that time, everything I did seemed harder and took longer with recovery no longer a quick bounce back. Yet I never imagined that I would be contemplating a lung transplant 10 months later. Because to me, this was just another infection, and in time with some hard work, my body would mend.

Egypt, January 2010

But there I was in Koh Samui, 10 months later struggling to walk. Clinically, I was in respiratory failure, my lung function having dropped below 30% and my medical team firmly pushing me towards being listed for transplant. I however, resisted. Stubborn as always I’d waved my hands and proclaimed this was just another infection. A nasty one sure, but I would get over it. I would bounce back. And off on holiday I went.

Koh Samui experienced heavy rainfall right before we landed. Everything was flooded, leaving us with the option of walking up the same street every day. I often joke that it didn’t matter because that was the only street I was capable of walking up.

The heavy rainfall had also affected hotel services. In particular the elevators were out of order. Thankfully there were chairs at the top of every staircase because now I not only needed to rest when I climbed the stairs, I also needed to rest when I went down a flight of stairs.

Samui Walking Street, November 2010

On Grant’s birthday we decided to walk along the beach towards a delightful beachfront restaurant that Grant had spied. Grant did all the talking. I had lost the capacity to walk and talk at the same time midway through the year, so Grant chatted to me as we walked. He also carried my handbag, as even the weight of something as small as a handbag could determine how many rest stops I would need to catch my breath.

I vividly remember feeling so proud of myself. I had only had three rest stops so far and in my mind I was coping with this stroll. That’s when an elderly couple, both with walking sticks passed us easily, as if I had been standing still. As they did, they were both avidly chatting to one another, and proceeded all the way up the beach without stopping once.

That 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.

The week we returned home, I completed my final medical exam and was officially listed for transplant.

When we decided to return to Koh Samui, there was one thing I needed to do. Although we are staying on the other side of the island this time, today we returned to walk along Chaweng beach. I carried my own handbag and I talked while we walked.


Sometimes, post transplant, it’s the little things in life that I am most grateful for.