TRACY HUGHAN
DOB: 04 Jan 1960
First symptoms Jan 1990 (aged 30) / diagnosed 01 Sep 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: our “baby”, Elise, now 20, our firstborn, Rachel, 26 and our son, Brendan, 23. Life passed happily for seven years following that first pneumothorax until I felt very breathless in April 1997. After xrays did not 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 the 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 for 11 years now. 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 visited Japan with my friend Kerry to visit my son, who has been living there for three years. 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!

I am finding it harder these days to catch my breath, but over all I am quite well and enjoying my life at 51 - more than 21 years after experiencing my first pneumothorax.