A Transplant is A Trade Not a Cure

Day 29: On the outside, I look healthy, but there’s a lot going on behind the scenes

One of the common misconceptions about a transplant is that it’s a cure
I will always be a person who has chronic health issues; I traded one set of health problems for another, the bonus being I am still breathing, still alive, and ready to continue the fight.
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My first complication had minor symptoms. My left hip ached, something that is seemingly innocuous. I ignored it for a bit. Perhaps I’d twisted my hip or slept funny. But when the pain persisted, I knew something else was going on.

Image 'snapped' in 2020

Investigations revealed avascular necrosis in my hip. The medication keeping me alive was also strangulating the small vessel that supplies blood to the head of my femur, causing that bone to start cracking. After eight months my team managed to stabilise the problem. Eventually, I may need a hip replacement.

“I’m sorry. I’m 99.9% sure you have post-transplant lymphoma. We’re waiting on blood test results for confirmation.”
The lymph nodes on the left side of my body had enlarged significantly. My breathing was laboured. My CT San showed a cavity in my left lung. In 2013, I was displaying all the symptoms of post-transplant lymphoma. The irony of post-transplant lymphoma comes from its origin. It’s caused by the very medications that keep transplant patients from rejecting their donated organs.
Two days after being told I had post-transplant lymphoma, a doctor I’d never seen before rushed into my room. Without preamble, he blurted out, “Have you been to Vietnam?”
I nodded.
He rubbed his hands with glee. “I don’t think you have lymphoma,” he said. “I’ve found a fungus in your blood. I’m going to run more tests.”

A fungus sounds like better news than lymphoma — but it wasn’t
The fungus I contracted has a reputation for mimicking lymphoma. It also has a reputation for being fatal.
Most people who contract this funky-fungi live in Southeast Asia. There are no treatment protocols. My medical team, along with the Infection Diseases team, were flying blind.
The guys in the white lab coats were super excited to have an opportunity to study something they had never seen before. They nerded out over the results of my bloodwork. This funky-fungi can be contracted as airborne particles or enter the bloodstream through an open wound. Eventually, the lab guys established that I contracted the airborne version of the funky-fungi, which then migrated to my blood.

I embarked on two years of the strongest oral antifungal. I no longer show evidence of the funky-fungi in my blood. But that doesn’t mean I’ve eradicated it from my system. It’s just as possible that the funky-fungi still lurking deep within my lungs — regrouping and getting ready to strike again.

Slip, Slop, Slap
Since my transplant precancerous and cancerous growths started developing on my face, chest, arms, and hands. The medications to prevent rejection also create a better environment for cancer. When cancer does develop, it thrives, growing faster because of the weakened immune system.

My worst skin cancer required plastic surgery on my ear and four weeks of radiation, in 2023.

Airborne respiratory contagions
Lungs are the organ most likely to reject. The average life cycle for a donated pair of lungs isn’t fabulous — it’s because unlike other organs, your lungs are exposed to the outside influences — particularly airborne respiratory viruses.
Once an infection settles in the lungs, even the common cold, there is a high risk of sparking rejection. When those white blood cells rush to an infection site, they scout around for any nasties — and donated lungs will always be considered a foreign body.
COVID-19, with its tendency to overspark the immune system, carries a greater risk of rejection than everyday lurgies.

I went into transplant with my eyes open wide.
I knew it was a trade, not a cure. I knew it would require enormous discipline with my medication regime. Your attitude can change everything, and I believe it’s one of the reasons why I’ve had such a successful outcome.

​* Post updated May 2024

Next in the 31 Days of Cystic Fibrosis series - Cystic Fibrosis is Still Waging War

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My new lungs may not have CF, but I still do.  

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