Sarah’s 20-Year Journey with Oxygen & the Urgent Call for Reform

When Sarah was pregnant with her third child, she noticed a change in her stamina and breathing. It was a problem that didn’t go away after she gave birth, and in fact declined over time. She began to consistently struggle with upper respiratory infections and her breathing became so labored she was unable to climb the stairs when visiting a high-altitude area. So, in May 2000, she spoke to her healthcare provider. They put her through a variety of tests, including her first bronchoscopy, before determining she had a rare form of sarcoidosis.

Sarcoidosis is an inflammatory disease in which the immune system overreacts, causing groups of cells to form clusters of inflamed tissue called “granulomas.” Though it most commonly affects the lungs and lymph nodes, granulomas can form anywhere in the body. Unfortunately, sarcoidosis is a progressive disease, so the main goal of treatment is to manage symptoms, decrease the risk of organ damage and improve quality of life.

For Sarah, this meant that for the next few years her healthcare team tried tirelessly to find medications that would ease her labored breathing, including Prednisone, steroids, and many different inhalers. But in 2003, it was decided that she needed to be put on supplemental oxygen. “I started on two liters and with a smaller D tank. Though the tank didn’t last long, it would fit in a bag so I could fling it over my shoulder,” Sarah explained. At the time her children were just four, six and seven years old, so Sarah struggled to carry her tank while also chasing them around. “I was on the concentrator at home which worked ok, but it took me a long time to get over the anxiety associated with going out. But as a mom there are things I just had to do, so I didn’t really have a choice,” she said.

Over time, her oxygen use increased from two liters, to four, and then six, which is when she approached her doctors about liquid oxygen. Her tanks had become so big and bulky by that point that they were drastically impeding her way of life. “I was really struggling because I was working and had young kids, so I was very busy, and it became unmanageable to have to also cart heavy tanks around. The tanks also took up valuable space in my home and were difficult to move, even with the oxygen cart,” Sarah said.

Her doctors approved liquid oxygen, which was a game changer for Sarah. “It was amazing, I could just fill up the small tank, put it in a backpack and away I went. I was able to go to the grocery store by myself and get to work without a problem. If I go out for the whole day, I bring an extra tank along just in care, but they are so much easier to use,” Sarah exclaimed.