A double lung transplant for her 18th birthday – Abi’s story
Monday 30 September 2019
Most 17 year olds have their minds on final exams, hanging out with friends, and dreaming big for the future.
But when Abi was 17, all she could think about was getting onto the organ transplant list. She was a long way from her family and home in Townsville, and her lungs were failing. Abi’s 18th birthday wish was to be strong enough to receive a transplant, and that a donation would arrive in time.
Now 20, Abi shares her story of living with cystic fibrosis, what it was like to receive a double lung transplant, and her advice for all Queenslanders.
The genetic disorder that damaged Abi’s lungs
Abi was born with cystic fibrosis, a genetic disorder that primarily affects the lungs and digestive system. A faulty gene causes the lungs and intestines to produce thick and sticky mucus. This causes impaired organ function, recurrent infections, and organ damage.
In Australia, one in every 2,500 babies are born with cystic fibrosis. While there is currently no cure, medical treatments and physiotherapy help with managing symptoms.
Living with cystic fibrosis can be a lot for a young person to handle, and for Abi, it really hit her when she entered her teen years.
“Everything was going really, really well until I turned about 13 and then had my whole teenage rebellion phase,” said Abi.
“The thing with cystic fibrosis is you're surrounded by a lot of death. I've had friends who've died, and family members and all that sort of thing. I didn’t see the point in looking after my health.”
Abi wanted to be a normal teen who didn’t have to constantly think about her chronic illness. But as time passed, she accepted that she needed to put more effort into her health.
“I was like, ‘Okay, no. I need to look after my health or I'm going to die.’ I thought I was still doing pretty well at that point. I thought, ‘I won't get sick. I'll just stay at this kind of level, I can work my casual job, I can go to school and be normal, just not as active.’”
Sadly, it didn’t play out as Abi had hoped. In her last year of high school, Abi’s lung function was around 33 per cent. Despite her best efforts, her health took a turn for the worse after finishing school, and her lung function plummeted to just 13 per cent. She was now dependent on oxygen therapy.
“I needed 24/7 oxygen; I couldn't walk five meters without having a coughing fit. If I stood up too fast, I'd blackout because of a lack of oxygen. All I could do was sit in bed.”
Abi was on a trip to Brisbane when her health rapidly declined and she was admitted to hospital; she was too weak to return to Townsville. Abi remained in hospital under constant care, and it soon became apparent that she would need a double lung transplant.
Waiting for the gift of life
A double lung transplant is a major surgery, especially for someone who is incredibly unwell. Abi worked hard to improve her health so she could be considered as an organ recipient.
“You have to go through what they call the work-up, which is all the tests, getting yourself as fit as you can be. I did my work-up the first time, and they said, ‘No, you're too sick,’ and then I'm like, ‘Okay, I'll work harder.’ So, I got a little bit more fit, a little bit more healthy, and they said, ‘Okay, we'll put you on the list.’”
With her mum at her side and the support from her family and friends back home in Townsville, Abi waited for the phone call. Incredibly, it came only days later.
“I was extremely lucky. Most people, on average, wait between six months and two years to get their first phone call. You can get a call and they’ll say, ‘We have lungs, but they have to be tested’, or, ‘We have lungs, but these people are first. If it doesn't work for them, then you'll be next.’
I got one phone call. I was the person who was supposed to be getting the lungs, and I got my lungs within a week. I got waitlisted Thursday, and then the next Thursday, I had my transplant.”
Abi received a double lung transplant a month before her 18th birthday.
Walking out of hospital on her own
The transformation that followed the transplant surgery was nothing short of astounding.
“Two weeks later I was out of the hospital walking on my own without oxygen. It was indescribable.”
After Abi was discharged from hospital, she remained in Brisbane to attend the post-transplant clinic.
“Those first few months are so critical where your body can just go into rejection for nothing, for no reason. You can be taking all your pills, you could be doing all your treatments, everything, and your body will just go into rejection. I'm very lucky that I didn't get rejection.
You have to have a support system, not just so they can help you with things, but the psychology of it all. You get survivor's guilt a lot of the time. It's hard. It’s really odd.”
Abi improved in leaps and bounds. On her 18th birthday, she did something that would be unremarkable in most other situations but demonstrated just how far she had come.
“I had friends come for my 18th birthday, and I blew up my own balloon for the first time since I was six years old. I did it really easily, and that just made it even better.
I was never able to do anything a normal teenager would do. And then I could.”
Life after a double lung transplant
So, what has changed for Abi in the two years since her transplant surgery?
“Absolutely everything. Everything. Just the little things – that I can go to the movies with my friends or go out on a date. I work full-time now, and that's something I never thought I'd be able to do.
I just have a whole different outlook, and I do my treatments, and I do everything I possibly can to keep myself healthy. I can live my life.”
Before the transplant surgery, there was no space in her life for hobbies; her health care was all-consuming. Now, Abi is enjoying going to gym to improve her fitness, and she is completing a traineeship in business administration. She returns to Brisbane twice a year for check-ups, but otherwise Abi is doing what she always wanted – to live a normal life.
Register as an organ and tissue donor
Abi’s experiences have shaped her into the strong young woman she is today, and she understands better than most how the gift of organ donation can save lives. She encourages all Queenslanders to join the donor register, just like she did.
“Just register. Register if you can. I'm registered, even though there's not a lot they can take from me because of all my medications. Even if you think, ‘They wouldn't be able to take anything’, you should still register.”
Around 1,400 Australians are currently waitlisted for a life-saving organ transplant. Almost everyone can be a donor; the most important thing is to register and talk to your family about your decision.
Find out more on the Donate Life website.