Living With IPF Makes Physiotherapy Especially Challenging

Last month, I suffered a significant injury to my left knee. I had just parked outside a medical building for an appointment. The sun was setting on a relatively mild Canadian winter day, and I slipped on a patch of black ice, dislocating my patella and falling hard onto the frozen concrete.

Unfortunately, I’ve suffered this injury in the past and had surgery in 2009 to stabilize my patella. The pain from a knee dislocation is excruciating, and I panicked that my patella was out of place.

However, there was a notable difference between this injury and past ones. I couldn’t catch my breath as I cried due to the pain and adrenaline, and I realized it was the first time I’d sustained this injury since I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016.

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My portable oxygen concentrator (POC) crashed to the ground with me, and I lay on the ice until someone came to help. Eventually, a registered nurse responded and quickly noticed that I was going into shock from the pain and the cold. As an IPF patient who is chronically under-oxygenated, I struggle with cold temperatures, so it was no surprise my body was shivering and my breathing was labored.

I don’t remember much from after my fall, but I tried to talk with the emergency responders as much as possible. I didn’t know what I needed or how they could help me. All of the medical emergencies I’ve sustained in recent years have been related to my lungs. I kept telling the responders to check my oxygen saturations, POC settings, and my capillary refill time. They assured me that they were, but needed me to focus on telling them how my knee felt.

Two days after my injury, I met with the orthopedic surgeon, who said I likely need ligaments reconstructed. A couple days later, I started physiotherapy (PT), and am still undergoing an intense weekly regimen. After each session, the team elevates and ices my knee.

After much reflecting, I’ve realized why PT is now more challenging due to my lung disease.

Increased breathlessness

Physiotherapy is meant to make you work hard, but exercise often causes increased dyspnea and exhaustion for IPF patients. Because I’m doing PT for a recurrent joint dislocation, I fear pushing myself too hard and suffering another dislocation, so I keep a close eye on my knee while exercising. Additionally, I must pay attention to how my lungs are feeling and where my oxygen levels are at. All of this monitoring leaves me as exhausted mentally as I am physically.

Difficulty lying flat

One thing my therapist works on during each visit is the passive stretching of my left leg, particularly my quadriceps muscles. To do this, I must lie flat on my back, though this is increasingly difficult to do as my lungs worsen because it triggers my cough.

Not only is this physically uncomfortable, but also given the ongoing pandemic, everyone stares when someone in the gym starts coughing. It’s socially isolating when others assume that I’m sick and shouldn’t have come to my appointment. Lying flat on my back for an MRI was also a challenge after my injury.

Added costs

In 2019, I wrote about how living with IPF has shifted my financial priorities. Many unexpected costs come with this cruel lung disease. Luckily, I remain employed and have benefits that cover the majority of my rehabilitation expenses — but not all of them. Many IPF patients can’t work because of their disease and may not have coverage for similar therapies.

Increased exposure to illness

Many IPF patients take medications that suppress the immune system, putting us at an increased risk of contracting infections. Many of us have spent the last two years isolating to avoid COVID-19. Unfortunately, attending physiotherapy appointments at a local medical center increases my exposure risk. It’s a necessary trade-off, as I need to strengthen my knee, but contracting the virus is still a concern.

Have you undergone physiotherapy while living with IPF? Please share your experience in the comments below.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.