We learned everything we could about IPF

Andy Parton, and his wife Suzanne, learned everything they could about Andy's IPF (idiopathic pulmonary fibrosis) diagnosis. Knowledge, combined with exercise and support, proved crucial to saving Andy's life. The Parton's have since become valuable resources for others going through similar things, and stay active in the BC Lung Association community.

On a typical ski vacation, Andy and Suzanne Parton are usually the first ones up the mountain.

The self-described “ski-nuts” count alpine skiing, hiking, fishing, ballroom dancing and scuba diving among the many ways they have kept active over 34 years of marriage.

Since early 2012, however, they’ve been climbing a different kind of mountain. On their Christmas ski holiday, Andy, 52, found he was exhausted after just a few runs. “I thought I must have a bug or something. Once we got home, I started coughing, and 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 him with IPF.

Because it is such a rare disease, IPF (Idiopathic Pulmonary Fibrosis) is often mistaken for other respiratory illnesses, including pneumonia or whooping cough. Andy was being treated for pneumonia, but his condition wasn’t improving.

"It had to be something else, and I felt that research needed to be done,” explains Suzanne.

She forced her reluctant husband to undergo more testing. Suzanne’s diligence would prove invaluable over the entire course of Andy’s treatment. This is not your average disease, and Andy, as it turns out, is not your average patient.

Knowledge is power.

Some are surprised to learn that Andy and Suzanne are grandparents. Their youthful energy is apparent at first meeting. Not only did they raise two daughters together, but they have also worked side-by-side at a manufacturing firm for 25 years. Their 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,” says Andy. “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 Andy’s first respirologist evolved into intensive research and advocacy for the treatment that was the correct fit. They received very little information about the disease in the early stages after diagnosis, so took it upon themselves to find out as much as possible.

“I think learning about the disease allows you the ability to cope with it,” says Suzanne. “Knowledge is power,” is Andy’s mantra. “The more you know, the more background you have, the more you can make a reasonable decision on a course of action.”

The couple’s diligence led them to Dr. Chris Ryerson and his team at the Pacific Lung Health Centre at St. Paul’s Hospital where Andy volunteered to be part of a research study.

Eventually, Andy’s care was transferred over to Dr. Ryerson. Andy also began the necessary testing to start him 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,” says Suzanne. “You can go to your care provider with real questions and understand the answers you are getting to those questions.”

Andy stayed as active as possible, and believes exercise probably saved his life.

From the day Andy was officially diagnosed after a lung biopsy, to the day of his bilateral lung transplant on February 20, 2015, Andy has stood by his commitment to staying as active as possible, and he will attest to exercise probably saving his life.

“Not only does it get the body functioning, but mentally, it takes you away,” says Andy. “The mental side of this disease is every bit as important.”

Because most patients on his level of oxygen are bedridden, oxygen providers had a difficult time meeting Andy’s needs. He and Suzanne started walking three miles a day and then increased to between six and 12 miles per day. He encourages 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,” says Suzanne.

They mastered the oxygen tank logistics.

Andy initially used oxygen to help him exercise. But as the disease progressed, just like a scuba diver or mountain climber, Andy 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. Suzanne would have to stash extra tanks at strategic points along their walks to ensure Andy had enough to make it home. Depending on the day’s appointments, they had to calculate how many tanks they would need to fill from the giant vessels stored in their garage.

“The logistics became very tight,” says Andy. 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, the couple continued to work and travel. “The idea was not to let the disease dictate. To try and be as active and have as normal a life as possible.”

From airlines to ferries, the couple learned to navigate the often vague or contradictory rules and regulations around oxygen transport. “Plan in advance,” says Andy. “Plan to be frustrated, plan for the extra time it will take. “

Andy’s condition stayed somewhat manageable until January 2015 when he was told that he had a month to live. “You never know when this stage will hit,” explains Andy. “There may or may not be a trigger.” 

At almost the exact same time they were arranging to transfer Andy to palliative care, they got the call that lungs were available, and Andy went in for a bilateral lung transplant.

More research is key - but province-wide patient support services are every bit as important.

“Obviously, we’d like to find a cure,” says Andy. “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 them, support was also key. “It’s every bit as important as research in this particular disease,” says Suzanne, who feels that informative talks and group sessions can transform fear into knowledge.

They would like to see support like that offered through BC Lung Association available to all IPF patients around the province. The Partons themselves have become a valuable resource for many patients in their area.

“We can relate to all stages, down to planning the funeral,” says Suzanne. Which is why they continue to stay active in the BC Lung Association community. Andy and Suzanne are regulars at charity fundraising walks, most often surrounded by family and friends. Until recently, Andy has been the only participant attached to an oxygen tank. He is thankful for his lifesaving transplant and all the freedoms new lungs bring. But he and Suzanne know that the path forward will be steep and full of new challenges. And like the first ski run of the day, they are ready to face them together. 

Page Last Updated: 25/01/2017