Carolyn’s story


I have found that friends and family, as well as the general public have little understanding of lung issues and automatically assume it is the result of smoking. I generally don’t tell anyone that I live with a lung disease.

My name is Carolyn and I live with COPD and diabetes. My husband and I left Sydney in 2002 and purchased a farm in the Nambucca, NSW. We had both left stressful, high powered positions and a mad Sydney lifestyle. Seven years later we left the farm and moved to Coffs Harbour and retirement. Then in 2010, a week after my 60th birthday, my husband had to call an ambulance as, for the first time in my life, I could not breathe.

In emergency they conducted tests around the clock as they did not know what was wrong. After about 10 days in Intensive Care Unit, High Dependency Unit, then a ward, I was allowed to come home. In retrospect I should not have been allowed home.

I couldn’t walk from the bed to the bathroom without being terribly breathless. I was back in hospital within a week in isolation and undergoing lots of tests to see if I had contracted bird or swine flu.

On discharge I visited my GP who advised me I had been diagnosed with COPD. I was shocked because I had never smoked and had never experienced any lung related issues. I was angry and frustrated. As an ex-librarian I researched all I could. I was back in hospital again a short time later. This time I had more confidence and insisted on being given more information.

While I was in hospital the pulmonary rehabilitation nurse came to see me. She spent a couple of hours explaining how lungs work and how COPD affects daily life. With this knowledge I felt more empowered and confident when I returned home.

I went to see the lung specialist I had seen in hospital and he advised me it was probably a result of a virus and stress, and that I would have it for the rest of my life. He referred me to pulmonary rehabilitation, an exercise maintenance program, at the hospital where I have learnt so much and feel so much more confident to manage my condition.

I also went back to singing regularly and found it helped tremendously. Since then my COPD has been extremely well controlled. I only have problems when I get the flu. It had been three years since any hospitalisation until 2018. In 2017, I was diagnosed with viral cardiomyopathy and had to have an ICD implant. This complicates any COPD issues. I also completed the cardiac rehabilitation at the hospital and found it to be extremely valuable. With the physiotherapists at the hospital I have a home exercise regime which helps with the COPD and the heart issues. My ejection fraction has gone from 30% to 50%. As the lungs and heart are so closely related I am trying to improve the function of both.

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.