Rebecca’s story


My name is Rebecca, I’m 49 years old and work in the allied health sector. In my spare time I enjoy random trips on my motorcycle. I was diagnosed with bronchiectasis in 2014 via high-resolution computed tomography (HRCT) after years of a huge and ever increasing productive cough. I had a stiff chest, sore airways, frequent chest infections and chronic low vitamin D levels. The immune system uses disproportionately high amounts of vitamin D when combating bronchiectasis and the resultant infective/inflammatory processes.

I was seeing a number of general practitioners and lung and sleep specialists trying to convince them to conduct further tests on my diaphragm. This went on for a few years before I was listened to and by this time I was seriously sick.

I was dropping to the floor unconscious several times a day and struggling to complete a sentence. I was so affected by the combination of overwhelming amounts of phlegm combined with the weakness in diaphragm function. I thought I was going to die when I finally found one lung specialist who said I could use the requested AVAPS machine I was asking for a prescription for. It was the fact that I was not able to sustain independent breathing while asleep and the amount of phlegm combined with chronically low levels of vitamin D (despite overdose in supplements) that directed me to conclude I likely had developed bronchiectasis with a progressively weakened diaphragm. It brought me to tears once when I asked a lung & sleep specialist if they could at least prescribe a trial of AVAPS, when she said she had no idea what I was talking about (with a measure of sustain, to my dismay), and she promptly Googled it right in front of me … coming to the conclusion that because she had no idea what it was, she was not interested in my request.

When I was finally diagnosed I was relieved that, as a prior teacher of anatomy, a doctor had finally listened to me, and simply granted my request for a HRCT chest and fluoroscopy of diaphragm to investigate neurological degenerative impact on diaphragmatic function. My diaphragm has very limited function, resulting in poor cough expectoration, and me requiring an AVAPS ventilator support when sleeping.

As a result of my condition, coughing up phlegm is very difficult due to poor diaphragm function, and I believe this is contributing to progression of disease because I have greater pooling of mucous in airways impacted with bronchiectasis. My disease is throughout my entire airways.

I have to work harder than ever to afford the health care and medicines required – my AVAPS machine and cough assist machine cost me more than $22,000 alone, which has all come from my own pocket. I have difficulty with shortness of breath on exertion, chest pain, and an inability to breathe effectively with any construction or load on my chest – being female is hard; I can’t always wear dresses or bras due to my poor breathing effort.

My family and friends still expect me to be able to do everything I used to do, especially since I “look ok”, which I find very discriminatory. This is where the stigma and stereotypes need to be broken down and society  informed that anyone can get lung disease and how it can affect you.

Someone may be desperately ill at times while still “looking ok”. I have experienced stigma due to my persistent coughing. People look at me like I am a spreader of contagious disease, rather than thinking that the lady they are looking at may indeed have a lung disease – but this is a stretch of their imagination as I do not look old, which is the demographic that is stigmatised to have degenerative diseases.

I believe there needs to be much more research into the contributors and complicating factors that impact on the progression of disease. People who are younger than expected have these terrible debilitating diseases and also need support to continue with their demands of everyday life, full-time workloads, and the costs associated with disease and complications arising from such. I live alone and work to pay for everything myself as I don’t qualify for government assistance. Lobbying for people like me to have access to a health care card would make a huge impact on my health, because I wouldn’t have to work 50-80 hours a week to afford to live, while also paying full price for all of my considerable health care costs. I believe advocating with government agencies would be helpful.

Sharing your personal experience with lung disease is a compelling and inspiring way for others to learn about and cope with their diagnosis. Your story may also encourage people to identify and act on symptoms they are experiencing, which may otherwise have been ignored.

Share your story, here.