Hallie Hill – Lymphangioleiomyomatosis (LAM)
While sleeping one night, I felt an excruciating pain in my right shoulder blade. My doctor sent me for x-rays and it was discovered I had a collapsed lung. They had to re-inflate it that day.
When did your lung journey begin?
After the pain I felt in my shoulder that night in 1999, I went to see my family doctor. There was a flight of stairs in the building and I began to feel my breath shorten from climbing. It turned out that my condition was LAM, which is a proliferation of smooth muscle tissue that affects my lungs.
In October of 2006, the very same lung collapsed. I spent 23 days in the hospital and they had to perform a wedge resection on my middle lobe when the lung would not stay inflated. In 2007, the same lung collapsed yet again! It was a pattern – it would stay inflated for a while then collapse again and again. I then spent 100 days in the hospital due to this.
How did your condition affect your life?
My teaching career ended, which was devastating to me. I was quite an avid sportsperson. I loved, skiing, snowshoeing, softball, and baseball. I really miss the social aspect of working and being involved with my interests.
But I’ve kept up what I can and started new things too. I go camping, sing in a choir (to the best of my ability), volunteer at Ronald McDonald House and some classrooms, take Tai Chi classes and knit. I’m also on my strata council and have traveled around the world. My biggest achievement since being diagnosed was completing my Masters in Early Childhood Education, which I began in 2007 and completely in 2010.
I’m lucky to have a really strong support network. I have my family, my extended lung family and lots of friends.
What is your treatment like?
I was in Pulmonary Rehab for a year but was not sick enough to continue. It really helped. But they needed the spot and oxygen for sicker patients. Even though I am on oxygen 24/7, I manage well and know my own limitations. I have a gym in my building and a stationary bike at home, so this is how I exercise.
Do you have any words of advice for those living with LAM?
Keep a positive attitude. Stay active and exercise however you can. Acknowledge your limitations and reinvent yourself. Learn what you can about your disease and stay informed. Attend lung support group meetings. My mantra is get up, dress up and show up. Most importantly, never give up!