I'm my own advocate

Cilla Kotz is no stranger to lung disease. Lung disease runs in her family, and when two of her siblings passed away from IPF (idiopathic pulmonary fibrosis), she knew she had to proactive with her own lung health. Cilla recently sat down with lung patient advocate Darcy Murdoch to share how important it is to stay positive, seek support, and most importantly, be your own advocate. 

When did you find out you had IPF?

After my siblings passed away, 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.

You have lost two siblings and a nephew to IPF, and have a lot of relatives living with it. Do you think there’s a genetic connection?

Absolutely! My niece, who is the sister of the nephew I lost, has now been diagnosed with IPF as well. These two are the children of the brother I lost in 1998 to 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 buildup 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? How about exercise?

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.

Do you remember the best advice you’ve received?

Keep a positive attitude, exercise as much as possible, attend support group meetings, be your own advocate, and have a good support system of family and friends.

In what way do you think our healthcare system can be improved to help IPF sufferers breathe easier?

I think there needs to be more awareness about IPF. This goes for the general public, but also doctors. 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. I'm very hopeful that research, which I have taken part in, will progress enough that a cure is found.

Cilla Kotz and her husband live in Vancouver near their two grown up children. Moving from the UK to Canada in 1970, she has since worked in the banking industry for 30 years, was a stay-at-home mom for 15 years, worked in a garden nursery and now is working at a health food store.

 

Page Last Updated: 25/01/2017