My father needed supplemental oxygen to breathe. But needing it and accepting it were two very different things.

For our family, oxygen was life-giving. It helped our dad leave the house, spend time with us, and hold on to pieces of his normal life during his pulmonary fibrosis (PF) journey. To us, it meant more freedom.

To him, it often felt like the opposite.

My dad was active, athletic, and larger than life in our family. He played sports, went to the gym, and carried himself with strength. Supplemental oxygen became a visible reminder of his PF diagnosis and his mortality. He felt self-conscious wearing it in public, and there were times when he tried to limit his use around us, even when we knew he needed it.

That was one of the hardest parts: seeing oxygen as a gift while knowing dad experienced it as a barrier.

The practical side was just as difficult. Unless you or someone you love has needed supplemental oxygen, it is hard to understand how complicated it can be. There are tanks, machines, tubing, cannulas, safety warnings, delivery schedules, and insurance rules. Equipment may be called “portable,” but leaving the house still required planning, caution, and courage.

As my dad’s pulmonary fibrosis progressed, his oxygen needs increased. His original oxygen supplier could not supply the high-flow equipment my dad’s medical team prescribed. At a time when our family was already carrying so much, we were also trying to navigate a system full of limitations.

My mom was a nurse, and even with her medical background, navigating the system of supplemental oxygen was daunting. She became dad’s strongest advocate, working with doctors, respiratory therapists, suppliers, and the insurance company to understand what was possible and what he needed. As his children, one of our most important roles was supporting her. Caregiving is not only about supporting the person who is sick. Sometimes it also means supporting the person carrying the heaviest load.

Respiratory therapists made a real difference for us. They helped us understand options we never knew existed and tailored solutions to dad’s needs. We learned that asking the right questions mattered. So did following up, pushing harder, and refusing to assume that the first answer was the only answer.

That is what I would tell other families: advocate boldly. Ask your pulmonologist, respiratory therapist, oxygen supplier, and insurance provider what options exist. Ask what could help your loved one move more comfortably, leave the house more safely, and have a better quality of life. There may be solutions you do not know about unless you keep asking.

That is also why efforts like the Supplemental Oxygen Access Reform (SOAR) Act, which has been introduced in both the U.S. House (H.R. 2902) and U.S. Senate (S. 1406), matter. Families should not have to fight so hard for something so essential. Supplemental oxygen can give people more time, more freedom, and more moments with the people they love. But the system around it needs to be easier to understand, easier to access, and easier to navigate.

For my father, oxygen was stressful, emotional, and physically complicated. It was also a gift. It helped him keep participating in life. And families deserve a system that makes that gift easier to receive.