Cilla Kotz - IPF

Lung disease runs in my family, and when two of my siblings passed away from IPF (Idiopathic Pulmonary Fibrosis), I knew I had to be proactive with my own lung health.

When did you find out you had IPF?

After my siblings passed away and a nephew as well, I wanted to do everything I could to be proactive about my health. I went for a CT scan in October 2012, but no symptoms were found. I went back for another CT scan in 2014, and trace amounts of IPF were detected. From there, I went for a surgical lung biopsy in 2015 and that’s when I received my official diagnosis of IPF.

How has this disease changed your life?

It’s been more of a mental struggle than a physical one. Although some physical symptoms I notice are when I walk uphill, I sometimes feel a little short of breath. Also, spicy food irritates my throat due to the mucus build-up and gives me a pretty bad cough. The positive is that this diagnosis has forced me to become more physically active, and more appreciative of my life, family and friends.

Do you use oxygen? Or exercise regularily?

I don’t use any oxygen. I try to keep fit by doing yoga twice a week, aquafit once or twice a week, working in my garden, and going for lots of walks. Keeping a positive attitude, exercising as much as possible, attending support group meetings, being your own advocate, and having a good support system of family and friends are all essential for sustaining quality of life.

How can our healthcare system improve to help IPF sufferers breathe easier?

I think there needs to be more awareness about IPF. This goes for the general public, but also for doctors too. GP’s need to know more about IPF so they can better inform their patients about it and not misdiagnose.

Also, as of today, the BC provincial government doesn’t cover the cost of Esbriet (pirfenidone) or OFEV (nintedanib), which are the only medications that can help ease the symptoms of IPF. This needs to change because these drugs can have a huge impact on the life of someone with IPF and they are very expensive. I'm very hopeful that research, which I have taken part in, will progress enough that a cure is found.

 

 

Page Last Updated: 26/05/2020