In the summer of 2024 , Pat Marshall, now 82, was hit with a triple whammy of chronic disease diagnoses: rheumatoid arthritis, pulmonary fibrosis and then diabetes. It was quite overwhelming for the previously healthy and active woman.
For some time she’d been having trouble lifting things over her head. “My golf swing had really gone downhill, and I was having trouble doing things like putting dishes into the upper cupboards,” says Pat. “I was also having trouble keeping up with my mall-walking group, getting out of breath, so I stopped going.”
The diagnoses pile up
Her rheumatologist diagnosed her with rheumatoid arthritis (RA), and started Pat on the steroid prednisone and methotrexate. She also sent her for a six-minute walk test. That’s when the spiral continued, according to Pat.
During her walk test, her oxygen level plummeted to 80 per cent after the first minute. She was sent immediately to the Emergency Department for oxygen and admitted for further testing during a four-day hospital stay.
“I had a long chat with a new respirologist at the hospital. He spent a good hour with me. It was a Sunday, not too busy, and we talked about life in Markham, as well as my symptoms, my possible RA-ILD (interstitial lung disease) diagnosis and treatment options.”
Pat left the hospital with prescriptions for sulfatrim, mycophenolic acid and home oxygen. She now uses oxygen all the time. She has a home concentrator, a portable battery-powered concentrator with a backpack and a portable oxygen tank.
As she adjusted to life with oxygen, her blood test results showed a sharp increase in her blood sugar, a common side effect of prednisone. She was referred to an endocrinologist for diabetes care.
“I was in a fog for quite a while. At the diabetes clinic they asked about my feet. They were a bit swollen, so then I was referred to a cardiologist, and given blood thinners. It was all just mentally overwhelming to go from nothing — no disease and no prescription drugs — to all of this,” remembers Pat of that time.
Treatment helps in every way
Over the next few months, Pat’s health gradually began to improve. The rheumatologist settled on mycophenolic acid and ruxience as the most lung friendly treatments for RA. This has improved her range of motion and reduced joint pain.
In consultation with her endocrinologist, she did not go on insulin, preferring to wait and see if stopping the prednisone improved her blood sugar levels. They are going down and Pat hopes to stop taking all diabetes medication soon. She has already been able to stop taking the blood thinners.
Oxygen therapy a game changer
Oxygen has had a huge impact on Pat’s quality of life. “Not just physically, but mentally. My brain is just working better. I don’t fumble to remember words as much as I did.”
There are a few drawbacks. When I go out, there are more things to remember to take on the way out the door,” says Pat. “And the backpack is added weight.” Pat can re-charge the battery of her portable concentrator in the car and she also keeps a portable oxygen tank in her car, just in case. “It’s much better than the alternative – not getting out of the house and not doing the things you want to do.”
Finally, and very importantly, oxygen means she can exercise, which helps in so many ways.
Exercise
With her oxygen, Pat is now focused on improving her endurance. She takes part in an online exercise class for people with lung conditions. Called Keep Breathing, the program is led by physiotherapist Lisa Dow and offers several one-hour exercise sessions each week.
“We focus on upper body strength and flexibility as well as balance and breathing exercises to move the rib cage,” says Pat. We have constant reminders to not hold our breath when moving gets hard. These tips and the social interaction keep me motivated to participate in these online sessions.”
Pat has noticed a significant improvement in her stamina, speed, and endurance since adding exercise to her routine. “When I re-joined my mall-walker group, many of them commented on how much better I was doing. I don’t feel like I’m holding everyone back any more.”
How CPFF has helped
When she was first diagnosed with RA-ILD, that’s the term she was searching online for information. Once she learned it was a type of pulmonary fibrosis, she looked PF up and found the CPFF website.
“It’s a wonderful website with lots of useful information, and not too overwhelming.” Since attending the Markham Walk in September, she’s interested in joining a Support Group and the CPFF Facebook group.
What advice would you give others
“If you’re dealing with several health issues at once, like I was, try to focus on one thing at a time. For me, the first thing was to reduce the prednisone and control my sugar levels. Then I had energy to focus on more exercise.
“I also found keeping a daily ‘log’ of symptoms, good and bad days, helped to keep me grounded. It was very helpful to review the log before I went to medical appointments and create a focused list of my questions or concerns. A full drug list and appointment dates also help me answer questions the many doctors might ask me.
“I’ve also found it amusing to observe something I call ‘disease competition’ when people try to explain how their disease, drugs, or symptoms, are worse than other peoples. I try not to get caught up in this kind of conversation.
“I find it best to focus on what I can still do in little chunks, and enjoy those things.”
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