The Chat You Never Want To Have With Your Doctor

Day 22: “There’s nothing more I can do for you”

The beginning of the end
By May 2010, my lung function had crashed again. This time I couldn’t talk my way into home IVs. This time it was “Go to hospital, go directly to hospital. Do not pass go, do not collect $200”.
I spent the first few days on oxygen, then only required oxygen when I was sleeping. For the first time, I tried prednisone — which did an excellent job of reducing the inflammation in my lungs.

My veins could no longer cope with a PICC line, so it was time for a more permanent solution, and I had a port-a-cath inserted near my left clavicle (also known as my bionic boob).
Still, I told myself, “I worked my way up past this once, I can do it again”. And I applied myself to my physio and my exercise.

The signs were there, but I didn’t see it coming
Uncle Gerry (an affectionate name I call my respiratory specialist) was notably absent from my room on this visit. I would hear him outside, making decisions, but he didn’t set foot in my room.
I joked with Sue, our Clinical Nurse Specialist. “Do I have to go downstairs and book an appointment at the clinic?”
In the morning, one of the junior doctors stopped by to let me know I’d be going home the next day. Later that afternoon, Uncle Gerry walked into my room and sat on one of the visitor’s chairs. He’s never sat down when visiting my room in hospital before.
Uncle Gerry looked me in the eye and said, “Sandi, I never thought I’d be having this chat with you.”
And my heart stopped for a moment because I knew what was coming next — the words you never want to hear from your respiratory specialist.
“There’s nothing more I can do for you. You need to decide if you want to go on the transplant waitlist.”
I went home from hospital with an oxygen concentrator and a referral to the transplant team at Royal Perth.

I threw everything I had at CF
Although I had worked hard to maintain my health before, I never worked harder than I did in the second half of 2010. Because with time and effort, I had ALWAYS bounced back — why should this time be any different? After work, I walked around the block, initially taking a stroll with Monkey. Monkey was 16, and her health was failing. I had to walk alone all too soon because even my slow pace was too fast for her.
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I did mini bouts of physio up to six times a day and nebulizers galore, trying to clear the gunk that was clogging my lungs. This extra airway clearance seemed to be working, as my sputum production decreased, but still, my lungs refused to work effectively.
All the while, I continued working, attending clinics at both Charlies and Royal Perth and transplant workup appointments.

31 Days of Cystic Fibrosis Bonus Fact
In 1998, there were rumours that Uncle Gerry was about to retire. I asked about his retirement plans outright, and he replied he hadn’t decided yet. So I said, “I’ll make you a deal. If you promise not to retire, I promise not to die on your watch.”
Uncle Gerry just laughed at me and didn’t commit to anything.

Six weeks after my transplant, I went back to say goodbye to my old medical team. I was planning to remind Uncle Gerry that I’d kept my promise (by the skin of my teeth, perhaps) and hadn’t died on his watch. But he beat me to it. The first thing he asked was, “Can I retire now?”

​Uncle Gerry did indeed retire several years later. In 2021 Dr. Gerald Ryan received an Order of Australia Medal (OAM) for services to people with Cystic Fibrosis.

Next in the 31 Days of Cystic Fibrosis series - I Wasn’t Losing a Battle, I Was Losing the Entire War

I needed an overseas holiday to prepare myself emotionally for transplant.

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