“I remember struggling to breathe, gasping for air. I felt like I was drowning. Next thing I know, I was waking up in a bed in ICU. My last and only option was a double lung transplant.”
“I was so scared. But the support I received from CFCC helped me to feel new again.”
- Anthony, double lung transplant recipient
You’re probably familiar with the phrase: ‘it takes a village’
Or, as we like to say, a community. That’s because a diagnosis of cystic fibrosis can change everything. Your work, your movement, your hobbies, your speech.
Anthony understands this better than most.
A few years back he was a steel fixer who worked a physically demanding job six days a week. So when he began feeling breathless, he knew something wasn’t right:
“One day, I was lying in bed and I could hear this sound in my lungs, like bubbles. I went to the bathroom and spat in the sink, and a chunk of blood came out. I thought I just had a really bad case of asthma.”
“I kept getting weaker until eventually I went to hospital. When I was diagnosed with cystic fibrosis, I was told I had the lungs of an 80 year old.”
For Anthony, this was the beginning of a long and arduous journey.
Being diagnosed with cystic fibrosis is overwhelming enough, without the added pressure of navigating the health system, accessing in-home care, getting physiotherapy, adjusting to oxygen and medication, and figuring out a ‘new normal’.
A few months after his diagnosis, things took a turn for Anthony.
“This time, it was really bad. I felt very weak, was short of breath, my face was pale, my lips turned blue. I couldn’t walk or take another step. I knew my body was starting to shut down.”
Anthony was put on oxygen full time. But when that failed to work, doctors ran more tests and found there was carbon dioxide in his lungs. Shortly after, Anthony spent 10 days in a coma in the intensive care unit, with his family told to prepare for the worst.
His last and only option was a double lung transplant.
“I was in hospital for another month before I was discharged. I was given a ventilator to live on 16 hours a day, and an oxygen tank for showers and meal times. I started to get weaker. I could not move my body. My aunt had to do everything for me.”
“There were times where I felt like giving up hope. I was tired of feeling breathless. I was tired of being a burden. I was tired of lying in bed.”
“I wanted a transplant. But I was told I could be waiting for a long time. There was a possibility I may die while waiting.”
Unfortunately, Anthony’s residency status meant he wasn’t eligible for Medicare. After three years on oxygen, an enormous amount of medication, and no way to earn an income, both cost and care fell to his family.
On top of this, his changing mobility needs made it difficult to get to appointments.
Anthony needed practical support, and fast.
Stories like this remind us how great the need, and how critical our work. While everyone’s experience with cystic fibrosis is different, they all deserve to live the life they want. And that’s exactly why we’re here, to improve the lives of people like Anthony through financial aid, support services and wellbeing programs, advocacy and research.
Sarah* is an experienced, proactive and dedicated CFCC support worker who met Anthony as he was being worked up for transplant. The first thing she did was get to know Anthony and his family, and understand his ‘pain points’.
Sarah explains:
“What did the family really need? Once I knew that, I could connect them to the right community supports. Anytime Anthony was uncomfortable or had a difficulty, I could raise that with his clinical team and try to find a solution.”
“Even though someone hasn’t had a transplant before, I’ve been through this process a few times so I can anticipate what they need, and when to check in on them. When you’re exhausted and you have a healthcare concern and you don’t know how to navigate a system, I can be the respite.”
Sarah was able to:
- Connect Anthony to a transportation service that could accommodate his reliance on oxygen.
- Tap into CFCC’s emergency financial assistance program to ensure Anthony never went without medication. This was critical, especially because he was on a Protection Visa and couldn’t access traditional support services such as Centrelink.
- Set up post-transplant CFCC and community based care at his home.
- Inform Anthony’s family about the additional support services and financial programs they could access, including liasing a dietician and other health providers to ensure he had safe food choices.
- Check in with Anthony through every stage of his journey, from diagnosis and treatment to recovery.
Of course, at CFCC we also offer support to access physiotherapy equipment, accommodation assistance, fitness programs, counselling, community connection, an information line, end of life care and so much more. As Sarah says, such consistent, empathic and intentional support makes an enormous impact for people with cystic fibrosis:
“We need these programs because there isn’t any comparable support. It doesn’t exist for people like Anthony. And when they aren’t supported, people suffer. People are scared. They can’t afford things.”
“People with cystic fibrosis just want to live their lives. We should be able to afford them that opportunity. It’s not just about the money or the grants that we put in. It’s about the time and the care.”
Right now there are 3,600 people living with cystic fibrosis in Australia. While the severity of symptoms can vary, it’s a lifelong condition with no cure.
Because Anthony was diagnosed later in life, his decline was rapid. He went from a fit and strong construction worker to being unable to breathe without assistance. But a double lung transplant gave him a second chance at life.
“I woke up to a nurse tapping my cheek. ‘Congratulations, you’ve got new lungs.’ It was an amazing feeling.”
“It’s been six months since the operation. I haven’t been able to breathe like this since my early twenties. I’m out the door first thing in the morning, breathing in that fresh air and not wasting a day.”
“I’m so grateful for the help of Cystic Fibrosis Community Care. Sarah was such a blessing. Her care and support made everything easier when I was scared. I am forever thankful that I have been given new life.”
Like many of the people we support, Anthony had no idea what to expect. He couldn’t possibly foresee how reliant he’d become on oxygen, the countless medications he’d need to stay alive, the multiple hospital visits, the complete reliance on other people to wash and feed him, the financial toll on his family, or that he would need a double lung transplant.
At Cystic Fibrosis Community Care, with your support, we can walk people like Anthony through the process. We can offer resources and information, help navigate the health system, and get them the right care and support when it’s needed most.
So please, if you’re able to make a donation today we can improve the lives of those living with cystic fibrosis, and help people like Anthony to breathe easy again.
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