I am a respiratory therapist, so I have understood supplemental oxygen for most of my career. I know what it does, why the body needs it, and how quickly things can change without it. But now, as someone living with idiopathic pulmonary fibrosis, or IPF, my relationship with oxygen has become much more personal.

In simple terms, the body needs oxygen to survive. In pulmonary fibrosis, the lungs become scarred, making it harder for oxygen to move from the lungs to the bloodstream. When that happens, oxygen levels can drop, leading to hypoxemia.

I was diagnosed with IPF more than 10 years ago. I began needing oxygen when I got COVID in 2021. Like many others, that experience was terrifying. At that point I needed 2-4 liters of oxygen continuously. The tubing gave me nosebleeds, and I felt like my ears were going to fall off my head from wearing it so much.  It was uncomfortable, frustrating, and overwhelming.

Pulmonary rehabilitation helped me turn a corner. I got on that treadmill and walked at 1 mile per hour for 5 minutes and repeated this four times a day. Eventually, I was walking at 3.2 miles per hour for 30 minutes. As my conditioning improved, my oxygen needs started to lessen during normal daily activities. I was able to go from needing oxygen 24 hours a day to only needing it only during higher levels of exertion. I was able to go back to work and function on room air.  I credit that progress to recovering from COVID and putting in the hard work through pulmonary rehab.

IPF is a progressive disease and I know that. That is why I think it is so important for patients to understand that there is more than one device that can be used to deliver oxygen. The type of device you use can make a huge difference in comfort, mobility, and whether you are actually able to use the amount of oxygen your doctor prescribes. Your physician and care team can help guide you.

More than one million Americans rely on supplemental oxygen, but too many of us struggle to access  the type our doctors prescribe. The bipartisan Supplemental Oxygen Access Reform (SOAR) Act aims to change that by making it easier for patients to get the oxygen they need for their health and daily life.  

An important part of the SOAR Act is that it would improve access to both liquid and non-liquid oxygen systems. Liquid oxygen is not as familiar to many people, but for those who need high flow oxygen, it can be life changing. One liter of liquid oxygen weighs about 4 to 5 pounds, can be refilled at home, and is equal to about 860 liters of gaseous oxygen. It can deliver flows of up to 15 liters per minute.

For example, I currently use 8 liters of oxygen. One cylinder lasts about an hour, and each one weighs around 14 pounds. If I wanted to go on a family hike, I would need to carry at least six cylinders, or 84 pounds total. It’s simply not realistic. But if I had a 5-liter liquid oxygen system, I could carry one light portable unit instead.

That kind of access matters. It allows people to stay active and engaged. It helps people live their lives instead of being limited by equipment that does not meet their needs. It also makes sense from a healthcare standpoint, because people who are better supported at home are less likely to end up in high-acuity hospital settings.

I share all of this because oxygen is not just a treatment. For many of us it is the difference between isolation and participation. It is the difference between staying home and joining your family. It is the difference between merely getting by and truly living.

If you want to learn more about the SOAR Act, I encourage you to read about it and take action here.

And to everyone else navigating oxygen and IPF, please know this. You are not alone. We are in this together.