Grace’s story

Idiopathic Pulmonary Fibrosis

Grace is a great-grandmother and carer to her husband. After almost a decade of experiencing increasing breathlessness, the 74-year-old was diagnosed with a rare and incurable lung disease.

I moved to Langwarrin in 2009 after retiring from the public service in Alice Springs to be near my two children and their families. I looked after my grandchildren on a regular basis until they were school aged. In 2015, my husband was diagnosed with Parkinson’s disease which has impacted on my day-to-day ability to function as I am now recognised as his carer.

After more than 15 years of experiencing breathlessness and enduring endless tests for heart disease, I went to the doctors in 2013 in sheer desperation to find a cause. I found I was not able to exert myself in day-to-day like cleaning the house or playing with my grandchildren. I wasn’t experiencing a cough or any other symptoms. The doctor organised a stress test and angiogram then referred me to heart and lung specialists. I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). This came as a great shock to everyone. After all the negative results I was finally given this devastating news.

As soon as I was given my diagnosis I researched the signs and symptoms on Dr Google and found that the considered prognosis was 3-5 years after diagnosis – I thought ‘what a load of rubbish’ and never went near Dr Google again.

Instead, I contacted Lung Foundation Australia and joined the Pulmonary Fibrosis Peer Connect Service. Through this program, I was put in touch with a person who is suffering with the same condition. I have found this so valuable as I can relate to them in many other ways that only they can understand and empathise with.  I now ring newly diagnosed patients who wish to be contacted by someone.  

After my diagnosis, I spoke with my specialist about taking part in medical trials and studies. I wanted to be involved because if I could, in any small way, help to reduce the number of people to be diagnosed with this disease, I would be very happy. Even to help support the ones suffering from the disease, especially when first diagnosed.                                 

I have been part of various studies run by the Alfred Hospital and every six months I was sent a questionnaire about my breathing and mental state. In 2014 and 2016, I was involved in medical trials for IPF run by the Frankston hospital for new treatments weekly/monthly as the doses were given. In 2018 It was noted that I had a need for the oxygen for all walking, exercises etc.

I can’t do all the things that my friends can do like walking, dancing and housework, or anything that uses extra energy.

It’s a depressive illness when you can’t do the simplest thing as tying your granddaughters’ laces as I can’t bend down because I get too breathless. I miss out on helping them learn to ride bikes, helping them on the flying fox, and any number of things that are taken for granted. I just wish I could be a fun grandmother.

In 2017 I had an altitude test and found that I would need oxygen to fly. This came to fruition in 2016 when I flew to Alice Springs. I found that I also needed oxygen to assist my walking and other activities in the town. In 2018, while taking part in a program at the Frankston Hospital, it was highly recommended that I used oxygen to prevent becoming breathless.

From my experience, I believe there needs to be a lot more education for GP’s. Although a person may look healthy, their symptoms should not be ignored.

Shortness of breath is not just a symptom of heart disease, but many other fatal causes.

Signs and symptoms are not always what they first appear to be. I also question why the maximum age for a lung transplant is 60 when a patient who is otherwise healthy at 65+ cannot be considered for the operation.

I hope in the future a stronger and more effective drug with less side effects will be found to stop the progression of this disease, and ultimately find a cause and a cure.

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