Lorraine’s story

Pulmonary Arterial Hypertension

My name is Lorraine, I am 78 years old and I live with Pulmonary Arterial Hypertension (PAH). Shortness of breath, the days when it’s difficult for me to breathe and walk and talk, has been an on-going issue for me.  I have four adult children, adult grandchildren, and great grandchildren.  I’ve had a busy life working to support my children. Their father passed away from brain cancer at 35 years of age so it was all up to me. I’m determined; I’ve never been a quitter. I worked for 24 years as a celebrant and loved it, and worked until I was 70 years of age when breast cancer said “stop”. I’ve also been a volunteer for many organisations over my lifetime.

My mantra is “never give up, just hang in there and something good will happen for you”.

In 1986 I was told repeatedly by doctors that I had asthma, to which I would reply “no way, it was not like my father’s attacks, and very different”. When I was first diagnosed with bronchiectasis by a lung specialist in 1987 I had never heard of the word or disease. I was then referred to the Royal Brisbane Women’s Hospital where I was given an appointment to see the thoracic department which I still attend today. I was hospitalised for nine days at RBWH while they ran many tests. During that stay I felt very unique and special because every day, medical students were sent to hear my story and ask questions. I experienced shortness of breath after having surgery in 1988, was told I had an enlarged heart in 1999, and was finally diagnosed with blood clots in both lungs in 2001. 12 years and many more hospital stays and tests later, I was diagnosed with PAH.

I think I have blocked out how I felt when I was first diagnosed with PAH and now it doesn’t concern me. I look after myself through exercise and diet. I was once a social smoker but I’ve been a non-smoker for 50 years. I do a refresher pulmonary rehabilitation course when I can get into a class and I attend Lung Foundation Australia’s Education Seminar each year.

I keep a positive outlook. Some days, particularly on wet, windy days and in winter, I struggle to breathe. I’ve been living in Brisbane for the last 20 months in an over-50s village, but I’m trying to sell and move back to sea air on the Sunshine Coast. The pollution in Brisbane from congested roads does affect me some days. Only occasionally, for no valid reason, I find I’m short of breath. Small footpath inclines, steps and holding my hands above my head to reach for clothes on hangers all leave me short of breath. I can do light gardening, but only for about 30 minutes – it’s difficult to bend over to pull weeds. I like to get outdoors and enjoy nature and I walk my small dog twice daily for about 15 – 20 minutes at a time. I watch a lot of TV and read, but I try not to knock myself out with things. With having scleroderma also as a side effect of the PAH I get fatigued easily. I am good for the first 2 – 3 hours when I get out of bed, so that’s when I do my light jobs. I have no partner, and no other help, it’s all me.

Awareness about any condition is an absolute must. When I was first diagnosed with bronchiectasis, I did not have a clue what it was, except that I knew it was in my lungs.

At a seminar last year, we were asked for a show of hands as the presenter called out lung diseases. With the call for “hands up if you have PAH”, I was the only one in a room of some 120-130. That to me, signifies how difficult a disease it is to have diagnosed.  I had it for years and felt there was an underlying factor for my shortness of breath.

Where would we be without the excellent services provided by Lung Foundation Australia?  They are doing an absolutely wonderful job. I’m helping fundraise and create awareness for scleroderma now and when I sell my Brisbane over-50’s home, I’m moving back to Coolum Beach as soon as possible and intend to start a support group. Support groups are important information sharing avenues – you know you’re not alone. I’ll also definitely join a Lungs in Action group.

Remember – “When you can’t breathe, nothing else matters”.

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.

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