Mary was in her 40s when she began having trouble with her breathing while working out. She had enjoyed running in the past, but after a relatively mild sickness, she could no longer endure her runs without exhausting herself for the rest of the day. Having been diagnosed with primary ciliary dyskinesia (PCD), a rare lung disease, when she was 17 years old, she decided she needed to discuss the problem with her doctor. 

Her doctor performed a 6-minute walk test to measure her oxygen levels and determined when Mary walked, her oxygen levels dropped, so she was prescribed supplemental oxygen for exertion. “At first, I thought I would just use it for a short time for running, but that has not been the case for me,” she said. That was 10 years ago. Since then, Mary has slowly needed more oxygen to complete her workouts, and now many other physical tasks, though she is not yet dependent on oxygen 24/7. 

The Oxygen Crisis

Supplemental oxygen is used for many reasons. While some people may have an infection and just need oxygen temporarily, others may have to use oxygen long-term. Since PCD is a chronic progressive disease, the use of oxygen long-term is not uncommon. Mary’s sister, who also has PCD, was reliant on her supplemental oxygen. “My sister was so dependent she needed to have a double lung transplant in 2014. She is doing much better now.”

When Mary began using oxygen, she was able to use a portable oxygen concentrator (POC) that provided her with about 1.5 liters, which was sufficient to meet her needs. POCs are light, small and quiet devices that deliver oxygen by pulse dose in bursts, making them ideal for use while out of the home. However, as needs increase, these devices may not be able to deliver enough oxygen. This was the case for Mary, who now requires 5 liters of continuous oxygen to keep her oxygen saturations levels in the 90s while exercising. Additionally, Mary uses a home unit at night. “Last year on a webinar I attended, one doctor said that POCs get 5 to 6 liters of oxygen and I was just shaking my head. Everyone should know that is not true, especially doctors prescribing them.”

If a POC isn’t right for you, Mary admits that it can be a challenge to find the right size tank. “Right now, I have a machine to refill the small tank, but those normally only last an hour, hour and a half depending on how I manipulate the regulator,” Mary explained. “I am lucky that I could probably make it to my car and home if I ran out of oxygen, but that is not the case for many people.”

Mary on oxygen “That is why when you are on oxygen every little hill seems like a mountain. I have to decide if it is worth carrying my oxygen tank because carrying things makes my breathing labored, therefore the tanks create as much of a problem as they solve.” - Mary

Mary’s sister was lugging her tanks into work with her every day because her needs were higher, over 10 liters per minute. To be able to work, she would wheel in a cumbersome 15-pound e-tank. “She tells the story of how she would try to take her kids to Baskin Robbins, but she needed to drag her e-tank so she kept knocking her two-year-old in the head with the tank,” Mary said. 

Liquid oxygen has a smaller, more manageable tank but oxygen delivery option that was never considered for Mary or her sister. Liquid oxygen, in addition to using a much less bulky tank, delivers the same amount of oxygen for a third of the weight. If Mary and her sister, having higher flow oxygen needs, were offered liquid oxygen, lugging around heavy tanks would never impede their daily lives. In the last few years, it has become harder to come by. It is no longer presented as an option by most doctors and has even been taken away from those who had relied on it. This means even more oxygen users are becoming homebound, being unable to carry the amount of oxygen they need to breathe. 

“That is why when you are on oxygen every little hill seems like a mountain. I have to decide if it is worth carrying my oxygen tank because carrying things makes my breathing labored, therefore the tanks create as much of a problem as they solve.”  

The Basic Right to Breathe

Correcting misinformation and changing attitudes about oxygen are issues important to Mary, which is why she started her own online forum to address these issues. Her website, Running for Air, supports the idea that people with oxygen aren’t feeble or helpless, they are productive members of society, and can do almost anything, they just need extra oxygen to do it. “Everyone deserves to be able to breathe. No one can survive without oxygen so it blows my mind that in this country, which is supposed to be a superpower, people can’t even get the basic oxygen to live their lives. Current regulations are just keeping people alive, but not allowing them to have a life,” Mary said.

For instance, when her mother-in-law who suffered from COPD was put on supplemental oxygen, they limited the number of tanks they would give her, so she was unable to live the way she had before. No longer could she go grocery shopping, pick up her grandkids from school or go on trips with the family. “It was like if the doctor said you need a pill a day, but your pharmacist only gives you 20 for the whole month. It’s just wrong of the oxygen companies not to ask patients what they really need.” 

Her sister had a similar problem when she told the man who brought her oxygen tanks that there wasn’t enough for her to go to work that week. “He just looked at her and said, ‘people on oxygen don’t work,’” Mary explained.

“There is this out-of-date formula where every patient is treated exactly the same by the oxygen companies unless the doctor’s office gets very involved. So, people like my sister slip through the cracks and can’t do basic things like go out to celebrate Mother’s Day with family. She had to beg the company for extra tanks, and they just said they don’t deliver more than once a week, so she was housebound,” Mary said. 

Mary giving talking at advocacy day Mary advocating for oxygen reform

Fed up with this type of discrimination, Mary is working with the Lung Association and other organizations to work to rectify the barriers oxygen users face with obtaining medically appropriate oxygen. Running on Air has put together a brochure to make it easier for patients to understand POCs, how they work and how to avoid non-FDA approved oxygen devices that Mary calls ‘noncentrators.’ That is, portable oxygen tanks available on Amazon and other sites that are a lot less expensive but are not medical grade and so they do not provide the right concentration of oxygen. People need to ensure they are getting FDA approved machines that give between 85-97% concentration, as opposed to the knock-offs which may only give 26%. 

“Patients who need oxygen run the gambit and by limiting the number of tanks they are allowed to get, it forces people to be less active which in turn makes their lung disease progress faster. There needs to be a change.”

There is bipartisan legislation introduced in Congress that addresses the lack of availability of liquid oxygen, reimbursement issues for oxygen equipment and respiratory therapists, and establishes a patient’s bill of rights. The SOAR (Supplemental Oxygen Access Reform) Act makes critical reforms to improve access to supplemental oxygen for Medicare beneficiaries. You can help get this bill across the finish line by asking your members of congress to cosponsor the bill here

Learn more about oxygen reform in our previous blog posts.

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