Share your story about using oxygen

When faced with the challenge to breathe, a patient should not have to face even more challenges accessing supplemental oxygen.

“I've had two stationary concentrators break down, as well as a (personal oxygen concentrator) POC break while away from home. It is extremely difficult to navigate the system when trying to obtain the necessary equipment and support.” – Stuart Cohen, Patient currently living with pulmonary fibrosis from Boynton Beach, FL

Approximately 50% of people living with pulmonary fibrosis who use supplemental oxygen report having problems with their access to oxygen such as not receiving the correct type of oxygen system ordered by their doctor, receiving limited to no education on how to use supplemental oxygen, and being given too few oxygen refills to meet their needs. As a result, many patients experience outcomes such as running out of oxygen, being unable to safely leave their homes, and avoidable hospitalizations.

“My greatest challenge that I deal with is my oxygen supplier’s policy that only allows me 10 tanks per week. My life is negatively impacted by this policy. I have to ‘budget’ appointments, invitations, shopping, etc. around this fact. I’m forced to stay home because of their policy. It’s inhumane.” - Cheri Riley, Patient currently living with pulmonary fibrosis from Rochester, NY

At the high levels of oxygen required by many people with PF, patients cannot use small, low-flow portable oxygen concentrators. Instead, they are dependent on heavy, bulky oxygen tanks that effectively result in many patients becoming homebound.

“Tanks are heavy, cumbersome and hard on the body…e.g., muscle strain, back pain. When using D cylinders and carrying them on my back, the tank continues to get heavier as the day goes on. Less than halfway through the day, my neck, shoulders, upper back and chest hurt. Now that my liters per minute have increased, I am using e cylinders that are pulled in a small dolly. Those are very hard to get in and out of a car. In addition, the pulling causes severe low back pain.” – Anna Risdorfer, Patient currently living with pulmonary fibrosis from Bel Air, MD

Using oxygen can be frustrating, inconvenient, and tiring for a patient. How do we fix the issues that supplemental oxygen users face? Share your story!

We are asking patients who use oxygen, patients who have used oxygen in the past, as well as their caregivers, family members, and healthcare providers, to share their stories of using supplemental oxygen. By sharing these stories through social media, with government and elected officials, and other communications channels, it will demonstrate the benefits the Supplemental Oxygen Access Reform (SOAR) Act will provide our community. Advocate for the SOAR Act today to ensure patients receive the right system for their supplemental oxygen needs, including liquid oxygen and education. Learn more about the PFF's advocacy efforts and further information on the SOAR Act here.