My name is Bob, and I am writing to share my personal journey with pulmonary fibrosis (a lung disease that scars and thickens lung tissues) - from the shocking diagnosis that left me in disbelief to the struggles with breathing and a life-changing lung transplant.

From Accident to Diagnosis
It all began in January 2020 with an accident that left me needing an X-ray. The doctors at the Emergency Department were concerned about my neck being fractured or broken. To be sure, they took an X-ray of my neck, which also showed parts of my lungs. The doctors saw something concerning in the X-ray results and asked for another X-ray of my chest to get a clearer look at my lungs. Little did I know that the procedure I was about to undergo would lead to a surprising discovery. After a CT scan, I was diagnosed with pulmonary fibrosis. More tests were done, but doctors could not pinpoint a definite cause of the fibrosis in my lungs and termed it “idiopathic pulmonary fibrosis”. There are so many things that can cause it! Thinking back over the years, the only logical explanation was that I was exposed to black mould from working in refrigerator trucks.

Living with Pulmonary Fibrosis
My mind and body were functioning well, but I couldn’t breathe and I was starting to feel very scared. I was looking forward to the day when I would receive a lung transplant, wake up after the surgery, and take my first breath. I simply wanted to be able to breathe. I was no longer able to work and wished I could ride my motorbike and do the things I enjoy. When I couldn’t breathe, it felt like I was underwater and needed to come up for air. I also experienced episodes where I passed out from coughing. One moment I was sitting, and the next moment I found myself on the ground. For my wife Roxy, it was a terrible experience. It was very traumatic for her to watch me going through all of that. Whenever I started coughing, she would start wondering if something bad would happen to me.

Support for Patients and Caregivers
It’s interesting how you don’t notice certain things until you have lung problems. Roxy and I may have heard of Lung Saskatchewan before, but I remember my doctor told me about the Pulmonary Fibrosis support group and we joined in 2020. We’ve received tremendous support and encouragement from the group. Lung Saskatchewan also has the Caring Breaths Financial Assistance Program, which helps reimburse some costs for patients with lung disease. It’s great to know that we can apply for financial aid through the Caring Breaths program.

The Gift of New Lungs
When I was told a match had been found for new lungs, I couldn’t believe it. Roxy and I went from laughing and celebrating to wondering if it might not happen. For a couple of hours, I was in a state of shock and couldn’t sleep that night. I questioned if it was real because I had heard about “dry runs” and last-minute cancellations. I tried to prepare myself for anything, but I stayed positive and hopeful. When they came to my room the next morning to take me to surgery and I saw the stretcher, I had a huge smile on my face! For Roxy, it felt like a dream. She had been worried about how sick I was, so when the doctor said there were lungs available, she didn’t want to believe, just in case it didn’t actually happen. She waited until I knew the operation was happening because she was afraid something would go wrong at the last minute. Once I was in surgery, she finally felt relaxed and even took a nice nap. It was the most relaxed she had been in a while. I had my lung transplant surgery in August 2023 and my experience at the hospital in Edmonton was amazing. All the hospital staff (including nurses, surgeons, doctors, physiotherapists, occupational therapists, social workers, and those serving meals and cleaning rooms) were kind, caring, helpful, and knowledgeable.

The Power of Community
Our friends from the Army, Navy & Air Force Veterans (ANAVETS) organized a fundraiser for us because they knew I hadn’t worked for a long time and that we would need to be in Edmonton for three months or more for the transplant process. The fundraiser event was amazing, and a lot of money was raised to help us with expenses throughout the lung transplant process. Without all of the support we got from organizations and the community, I don’t know how we would have managed.

Breathing with New Lungs
Fortunately, my recovery went according to what they expected. It was a textbook recovery for me, but I know that many people face difficult challenges. My advice to people going through a similar journey is to stay positive and listen to your doctors, nurses, and transplant team. Don’t compare yourself to other transplant patients because everyone recovers at their own pace and follows their own unique path. Find things that keep you positive. For me, it’s my wife, friends, family, and reggae music. They even played Bob Marley for me when they took me into surgery! We brought in Jamaican food and other items from outside the hospital to add variety to the menu and make the days more exciting.

I plan to ride my Harley, go to Jamaica, return to work, catch up on all the tasks that were neglected around the house and yard because I was sick, and simply enjoy each day. I feel like I am 23 years old again! It’s so nice not to be connected to oxygen and have the energy to do things again. It’s like having a new lease on life. Just being able to breathe - I can’t find the words to describe it!

Your donation makes a difference, thank you for supporting Lung Saskatchewan.

Yours Sincerely,

Bob Hekelaar