A Daughter’s Journey Through Pulmonary Fibrosis

By Suzana Pinto

At 32, I never imagined I’d have to deal with my father getting sick, let alone dying because of pulmonary fibrosis.  Sadly, that’s my reality, but I hope that by sharing my family’s journey with pulmonary fibrosis, I can bring awareness and hope to others.

My father and mother emigrated from Portugal to Belleville, ON in the late ‘70s, and brought me into the world – their only child – a couple years later. Growing up my father was never sick, or if he was, he never complained. It was in 2012, when he fell ill with pneumonia after a trip home to Portugal, that our lives would change. He had difficulty breathing, and at my mother’s persistence he agreed to go the emergency room.

It was a chest x-ray that raised alarm. His doctor informed him that there was something wrong with his lungs, and they didn’t know what it was. After 6 months, he finally got an appointment with a lung specialist; his pneumonia had also returned. My parents then received the news: my dad had pulmonary fibrosis.

Although the specialist said it looked like he had it for years, they couldn’t pinpoint when or how my dad contracted this disease. Maybe from years of working in a glass factory? English was my parents’ second language and they struggled to understand the diagnosis.

I took on the role of translator, and commuted frequently from Toronto to Belleville to attend his appointments and help my mom. I also did my own research, and was the one to tell my mom that dad might only have 5-7 years to live. My father was generally asymptomatic – he never smoked, and even returned to work after his diagnosis. He was prescribed medications and puffers, but they appeared to make him worse, and cause him to cough (which he never really did before). As he was being weaned off them, his health started to decline.  It all happened so quickly, there wasn’t even a chance to discuss transplant. We were basically told there was nothing that could be done.

On December 19th, 2013, during Toronto’s notorious ice storm, I got the call that my dad had been hospitalized. I rushed – as cautiously as I could – to be with my family. My mother had a hard time with hospitals, so I took the lead. I advocated for us, translated for my family, and ran the show as best as I could.

You never know when you’re going to go. My father didn’t expect it either, at the age of 62 he was focused on retirement, and hadn’t planned for it. You never dream it will happen to you.

Because he didn’t have many visible symptoms, wasn’t on oxygen, and rarely complained, it was hard for people to wrap their head around the severity of his situation. It was very challenging on my mom and me. She was his sole caregiver, and he didn’t want anyone, even family, to see him in his state. I tried to relieve my mom by coming home frequently. Often, my coworkers assumed I was taking vacation. They had little idea of what I was going through.

My advice to others is to open up – both within your family, but also with your work colleagues – and lean on others. As much as I wanted to keep my personal life to myself, people noticed I was going through something, and may have been more understanding had they known my struggles.

So much is known about things like cancer or heart disease, but there was so little on pulmonary fibrosis when my dad was diagnosed. Since his passing, I’m hopeful to see advancements in research, however, it is bittersweet. I’m happy to see more treatments, but sad they weren’t available to help my dad at the time.

Since becoming a volunteer with the CPFF, my main goal is to increase awareness. To honour my father, and to raise funds to advance research and increase awareness, I’m participating in the Scotiabank Toronto Waterfront Marathon on October 22. Please consider sponsoring me and my team by clicking the link below, and help us make a difference in the lives of all Canadians affected by pulmonary fibrosis.

Team Fundraising Page

Thank you!