First symptoms January 1990 (aged 30) / diagnosed 01 September 1997 (aged 37).
I had my first pneumothorax when I was 18 weeks pregnant with my third child in January 1990. At the time, I was hospitalised with a draining tube in my chest for a few days.
When my right lung collapsed again a few weeks later, a thoracic surgeon stuck my lung to my chest wall. I was 25 weeks pregnant at the time of the pleurodesis and was more worried about my baby than myself. I did not have a biopsy. The surgeon thought I just had cysts. I was anxious for the rest of the pregnancy, but gave birth to a healthy daughter in June 1990.
My husband Allan and I have three children: that “baby”, Elise, our firstborn, Rachel, born in 1984 and our son, Brendan, born in 1987. Life passed happily for seven years following that first pneumothorax until I felt very breathless in April 1997. When xrays failed to reveal anything, I was sent for a CT scan. My doctor was perturbed by the cysts in my lung and decided I needed a biopsy and further pleurodesis of my right lung.
Thus I was diagnosed with LAM on 01 September 1997. It was helpful that we heard the diagnosis the day after Princess Diana was killed in a terrible car accident. People wonder why I always say this, but it really did help, making me feel more positive about still being part of the world despite the disease. I was also happy that my children were a bit older so that as a family we could deal with LAM as we dealt with any other situation that arose. Life was busy and there were many after school activities.
I have always loved painting, but didn’t really do much while I had small children. I started again after receiving paints from my sister for my 40th birthday. I have been going to the same class since 2000. It is a social painting class so sometimes not much painting gets done! I also enjoy the company of my LAM friends in Melbourne and our special lunches following twice yearly clinics at The Alfred. As my symptoms have progressed only slowly, I have been able to keep working. I do not need supplementary oxygen and my LAM is just very annoying. It is those stairs and hills!!
In 2010 I travelled to Japan with my friend Kerry to visit my son, who was living there. Although I was worried about the risk of suffering a pneumothorax during the flights, everything went well. While in Japan, we climbed many hills to visit temples. It just took me longer than the other two to catch my breath!
Recently, I managed a holiday in Thailand with my younger daughter, Elise and went snorkelling. By using a life jacket I was able to keep up with everyone.
I am finding it harder these days to catch my breath, but over all I am quite well and enjoying life in my mid 50s, almost quarter of a century after experiencing my first pneumothorax.