Deborah's Bronchiectasis Story
The doctors knew that something was wrong the moment I was born.
I wasn’t breathing well and had to be immediately put in an incubator. Eventually, I was discharged from the hospital and sent home. However, at my 10-day check-up, the doctor was not happy with how my lungs sounded and wanted me to be sent to St. Paul’s Hospital in Saskatoon for further testing. My mom cried the entire drive from Kindersley to Saskatoon. I can’t imagine the terror she felt seeing her newborn child struggling to breathe. At St. Paul’s Hospital, they put me in a cool tent with the bed tipped down, and told my mom she was supposed to do percussion on my chest. She struggled to “hit” me and cried when she had to do it. She remembers a nurse telling her to hit me harder. Eventually, we were sent home with little understanding of why I wasn’t able to breathe well.
Once I was at home, I would be well for two to three weeks but then get a high fever and consequently be placed on antibiotics again. It seemed like an endless cycle. In the coming years, I would continue to get lung infections and be admitted to the hospital regularly with pneumonia. The doctors knew it wasn’t asthma and had me tested for cystic fibrosis three times, but it always came back negative. I also had tubes put in my ears to help with hearing issues. I had surgery approximately once a year from age 4 to 18 for the ear tubes. Sinus and lung infections were a regular occurrence for me.
The constant hospitalizations were hard for my family as they were frustrated and felt helpless. My mom was the rock who was always at every appointment and the one who sat with me for hours in waiting rooms. At school, I always knew something was wrong with me because I couldn’t keep up with the other kids, and no one else my age was getting admitted to the hospital so frequently. I loathed ParticipACTION Days as I would always come in last. When I got to high school, the dreaded 12-minute run (or Cooper run) was hell. It took me ages and eventually, everyone else would be done and just stood there watching me struggle to finish.
The turning point came when I was 10 years old, and I started playing ringette. I finally found a sport that worked for me! I could skate for a 45-60 second shift, and then get a break to catch my breath before going out again. Unlike other sports where you had to run for minutes at a time, the quick shifts allowed me to participate.
I was diagnosed with bronchiectasis when I was 14. Bronchiectasis is a condition where the lungs’ airways are abnormally stretched and scarred, resulting in mucus build-up. Often, bronchiectasis is caused by an infection or other conditions that injure the walls of the airways or prevent mucus from being cleared. The diagnosis was great to have, but since there is no cure, my life didn’t change much. I continued to have frequent infections that would result in hospitalization.
As the years went on, the medications got better, and I spent less time in the hospital. The side effects from the medications are usually horrible but at least I wasn’t admitted to the hospital often anymore. In the last decade or so, I have started to get pseudomonas infections. Pseudomonas is a bacteria that healthy people can fight off but can make immune-compromised people sick. There is only one oral medication that works to treat pseudomonas so if it doesn’t work, I have to go on out-patient IV medication. Because I have had so many IVs over the years, I no longer have veins that will support the strong antibiotics, so I must get a PICC line (a type of long catheter that is inserted through a peripheral vein, often in the arm, into a larger vein in the body) each time I need the IV medications for a minimum of two weeks.
Bronchiectasis has impacted all areas of my life, but I am the type of person who wants to do everything. I love to travel, play sports (especially ringette), and be active. I try to be as “normal” as possible. I had never met anyone with bronchiectasis but finally got to talk on the phone last year with someone who also has this condition, and it was so amazing to compare notes and have someone I could relate to!
When I started working at Lung Saskatchewan it was the first time in my life, I felt like I could be open about my lung disease from the get-go. In past workplaces, I was always cautious about how much I shared, as employers don’t want to hear you will be off sick. I have always had to “hoard” my sick days and hope I had enough to make it through the year. At Lung Saskatchewan, the minute my cough starts to sound bad, I have two nurse colleagues, Jill and Jaimie, checking in on me! My other co-workers are also very understanding, they provide support when I am run down and need time to rest and get better.
But the absolute best part of working at Lung Saskatchewan has been meeting so many other Saskatchewan people with lung disease. I am so proud to work for an organization that advocates for people like me. The strides made in research, medications, and education of healthcare professionals and patients in my lifetime alone, are mind-boggling. It keeps me hopeful that I will continue to thrive and be able to enjoy life for many, many more years to come. If you need support, please feel free to call our Lung Helpline at 1-833-385-LUNG (5864). It is a free, confidential, lung information service, managed by Certified Respiratory Educators.
Thank you for reading my story. Please consider donating to Lung Saskatchewan and help us continue the work in health care education, supporting the groundbreaking respiratory research happening right here in the province, and all the valuable resources we offer.
Thank you for supporting lung health in Saskatchewan!
P.S. If you or someone you know has bronchiectasis and would like to connect, please feel free to email me at firstname.lastname@example.org.