On a typical ski vacation, we are usually the first ones up the mountain. As self-described “ski-nuts”, we also enjoy alpine skiing, hiking, fishing, ballroom dancing and scuba diving among the many ways we have kept active over our 34 years of marriage. And then life changed.
When did breathing difficulties start for you?
Since early 2012, we’ve been climbing a different kind of mountain. On our Christmas ski holiday, I was just 52 and found I was exhausted after just a few runs. I thought I must have a bug or something. Once we got home, I started coughing a lot. In a week or two, I was coughing every second, day and night.
At first doctors thought it was a simple lung infection – six months later they diagnosed me with IPF (Idiopathic Pulmonary Fibrosis). Because it is such a rare disease, IPF is often mistaken for other respiratory illnesses, including pneumonia or whooping cough. I was being treated for pneumonia, but my condition wasn’t improving. It had to be something else, and my wife Suzanne felt more research needed to be done.
Suzanne and I learned everything we could about IPF (idiopathic pulmonary fibrosis). Knowledge, combined with exercise and support, proved crucial to saving my life. Suzanne forced me to undergo more testing. My wife’s diligence proved invaluable over the entire course of my treatment. This is not your average disease and, as it turns out, I was not your average patient.
How did you handle your diagnosis?
Some are surprised to learn that we are grandparents. Our youthful energy is apparent at first meeting. Not only did we raise two daughters together, but we have also worked side-by-side at a manufacturing firm for 25 years. Our partnership has been a wellspring of mutual support and commitment to tackling IPF one challenge at a time. You have to be proactive in your own treatment. Working your way through in a calm but assertive manner will generally get you through most things.
What began with a list of questions for my first respirologist evolved into intensive research and advocacy for the treatment that was the correct fit. We received very little information about the disease in the early stages after diagnosis, so we took it upon ourselves to find out as much as possible.
Suzanne thinks learning about the disease allows you the ability to cope with it. I agree. Knowledge is power has become my mantra. The more you know, the more background you have, the more you can make a reasonable decision on a course of action.
Our diligence led them to Dr. Chris Ryerson and his team at the Pacific Lung Health Centre at St. Paul’s Hospital, where I volunteered to be part of a research study. Eventually, my care was transferred over to Dr. Ryerson. I also began the necessary testing to start me on the process to qualify for a bilateral lung transplant. There’s so much more you can do with your disease if you understand it. You can go to your care provider with real questions and understand the answers you are getting to those questions.
What role did exercise and oxygen play in your life?
I tried to stay as active as possible, and I believe exercise probably saved my life. From the day I was officially diagnosed after a lung biopsy, to the day of my bilateral lung transplant on February 20th, 2015, I have stood by my commitment to staying as active as possible, and I attest to exercise most likely saving my life. Not only does it get the body functioning, but also mentally, it takes you away. The mental side of this disease is every bit as important.
We started walking three miles a day and then increased to between six and 12 miles per day. I encourage anyone awaiting transplant to keep moving and stay in the best shape possible, even if it’s just a few minutes a day of activity.
We didn’t want to give them any opportunity to say no, because it was either new lungs or nothing.
Because most patients on his level of oxygen are bedridden, oxygen providers had a difficult time meeting my needs. But we mastered the oxygen tank logistics. I initially used oxygen to help exercise. But as the disease progressed, just like a scuba diver or mountain climber, I eventually needed to be connected to a tank at all times.
This meant a daily regimen, involving filling and changing multiple tanks. The learning curve was steep. My wife would have to stash extra tanks at strategic points along their walks to ensure I had enough to make it home. Depending on the day’s appointments, we had to calculate how many tanks we would need to fill from the giant vessels stored in their garage. The logistics became very tight. Like scaling Everest, planning was everything. Simple delays like getting stuck in traffic could take on a whole new level of frustration. Determined to live life as fully as possible, we continued to work and travel. The idea was not to let the disease dictate and to try to be as active and have as normal a life as possible.
From airlines to ferries, we learned to navigate the often vague or contradictory rules and regulations around oxygen transport. Plan in advance I always say. Plan to be frustrated – plan for the extra time it will take. We have since become valuable resources for others going through similar things and stay active in the BC Lung Association community.
Did your doctors tell you that you had just a month to live?
My condition stayed somewhat manageable until January 2015 when I was told I had a month to live. You never know when this stage will hit. There may or may not be a trigger. At almost the exact same time we were arranging for my transfer to palliative care, we got the call that lungs were available, and I went in for a bilateral lung transplant.
What are important steps the medical community can take?
More research is key – but province-wide patient support services are every bit as important.
Obviously, we’d like to find a cure. That’s going to be a very long process, so we’d like to see increased funding for research areas that are looking promising.
For us, support is also key. It’s every bit as important as research in this particular disease. Informative talks and group sessions can transform fear into knowledge. We would like to see support like that offered through BC Lung Association available to all IPF patients around the province. We have become a valuable resource for many patients in BC.
We can relate to all stages, down to planning the funeral, which is why we continue to stay active in the BC Lung Association community. We are regulars at charity fundraising walks, most often surrounded by family and friends. Until recently, I have been the only participant attached to an oxygen tank. I’m thankful for my lifesaving transplant and all the freedoms new lungs bring. But we know the path forward can be very steep and full of challenges. Like the first ski run of the day, we are ready to face them together.