What Is It Like to Use Portable Oxygen? Here’s How People Get Over the Challenges
Key takeaways:
People with health conditions that make it difficult to inhale enough oxygen often rely on portable oxygen to breathe better.
Those who use portable oxygen say it can be physically demanding.
Despite the challenges, portable oxygen users say the machines can significantly improve their quality of life.
Breathe in. Breathe out. Breathe in. Breathe out.
An everyday activity that is effortless for people with healthy lungs is a very different story for those who have a health condition that makes them dependent on portable oxygen.
To breathe, they rely on having oxygen delivered to their bloodstream through a plastic nasal tube connected to a portable tank or to a machine that pulls in room air and extracts oxygen.
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Below, two oxygen users, a respiratory therapist, and a physician offer reassurances and tips based on their personal and professional experiences with using oxygen.
‘Don’t be afraid of it’
As someone who was once told that she might need a lung transplant because of her severe emphysema, Valerie Chang, of Honolulu, offers reassuring words to people who require supplemental oxygen to stay alive.
“You can still do things with oxygen,” says Valerie, who is 66 and has relied on portable oxygen for 15 years. She serves as executive director of the Hawaii COPD (chronic obstructive pulmonary disease) Coalition. “You can still have a life, and you can have a better life with oxygen. Don’t be afraid of it.”
But she also knows that using portable oxygen is hard work.
Lugging around oxygen tanks and portable concentrators can be challenging, especially when traveling or doing chores and errands. And Valerie says dealing with oxygen suppliers and insurance companies requires vigilance, knowledge, and constant self-advocacy.
Valerie’s severe emphysema symptoms have eased over the years, but she’s still a regular oxygen user. In 2020, her supplier stopped providing convenient, portable liquid oxygen. Her daily routine now includes using a stationary oxygen concentrator when she’s at home, a 10-pound portable concentrator for travel and chores, and a lighter-weight portable concentrator for quick errands.
“I don’t need supplemental oxygen if I’m going on a slow, leisurely walk,” she says. “But I need it if I’m going to walk at a brisk pace, exercise, go to sleep, or be at 3,500-feet of altitude of and above. And if I’m going hiking or need a high-flow rate — like when we’re in the New York subways, where there are no escalators or elevators — I need a strong friend to carry the oxygen machine and wheels for me, because they’re so heavy. And I need to have enough batteries. Just like your cell phone, portable oxygen doesn’t work as well if you try to charge it while you’re using it.”
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In order to get a machine that meets your needs, she suggests working with an oxygen vendor that offers a trial period or will give a refund if you need a different tank or delivery system.
“Test it under various conditions,” she advises. “If you typically walk up hills or stairs, make sure you can use the machinery to keep saturated while walking at the speed you normally walk while carrying things. The problem is that right now, nothing that provides continuous flow weighs less than 10 pounds.”
‘It can be really frustrating’
Medicare reimbursement for liquid oxygen changed recently, putting more limits on what’s covered, and insurance payers followed suit. These changes limited options for people using oxygen.
Colleen Connor of West Chester, Pennsylvania, is one person these changes affected. She used to depend on a reliable, lightweight, portable liquid oxygen delivery system that she wore as a backpack to receive continuous, high-flow oxygen. This system allowed her to continue working longer than she would have been able to otherwise, raise two children, and enjoy the outdoors fairly hassle-free. But she’s no longer able to use it, because her insurance doesn’t cover it.
Colleen, a 54-year-old former sales executive, has been on oxygen since a 2007 diagnosis of pulmonary arterial hypertension, which was followed by treatment for breast cancer in 2018. She now uses a concentrator around the house, and when she ventures out for errands or events she takes a large, metal E-size oxygen tank, which she carries on a cart.
Because her health insurance plan limits her to 30 tanks a month, “I use less than I need by conserving how much I use,” she says. “Between customer service issues, ordering, and delivery, it can be really frustrating.”
And depending on oxygen tanks can be grueling.
“It’s hard to go to the supermarket, get in and out of the car, push a grocery cart and shop at the same time I’m pulling an oxygen tank behind me,” says Colleen, who was able to maneuver freely when she had a portable liquid oxygen unit. “I’ve been an athlete my whole life, and I can’t imagine how older people do this.”
She’s done research into how to advocate for herself, and she’s connected with support groups to find the best equipment and treatment plans.
“You have to be your own advocate to receive the oxygen equipment that will work for you,” she says. “Listen to your body and use a pulse oximeter to make sure you’re receiving enough oxygen. You can’t depend on anyone else. You have to safeguard yourself and have a reserve supply handy.”
‘You can still have a great life’
Being told by your doctor or lung specialist that you need to use portable oxygen — perhaps for the rest of your life — is a shocking and often frightening diagnosis, as Rebecca McKnight, a registered respiratory therapist in Pensacola, Florida, acknowledges.
Yes, using portable oxygen can restrict mobility and force you to make changes to your lifestyle. But Rebecca, who has been a respiratory therapist for more than 20 years, also knows that using portable oxygen correctly and consistently can improve your quality of life.
“When people go on oxygen for the first time, they’re sometimes scared about their mobility and things that might go wrong,” says Rebecca, who works for a hospice provider. “We have a lot of vanity in our society, and people might not think it’s pretty or cool to have an oxygen tank. But your life is not over if you have to use portable oxygen. You can still have a great life and make great memories with your friends, family, and those you love if you remain calm, follow safety instructions, and push forward on the days that are hard.”
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
If you or a loved one was recently started on oxygen therapy, you might be wondering how it works and why it’s necessary.
Oxygen is necessary for life. Every cell in your body uses oxygen every second of the day to stay alive. When you breathe in, your chest muscles and diaphragm contract so that air fills your lungs. Oxygen passes through your lungs and into your bloodstream and your red blood cells. Your heart pumps the red blood cells to the rest of your body so they can deliver that oxygen.
Certain medical conditions affect one or more of these steps. When this happens, your body doesn’t get enough oxygen. This makes it hard or impossible to do your everyday activities.
People may need portable oxygen if they have:
Chronic lung conditions like COPD, emphysema, lung cancer or cystic fibrosis
Heart failure or pulmonary arterial hypertension
Conditions that affect the nerves or muscles, such as muscular dystrophy, spinal muscular atrophy, or cerebral palsy
Not everyone who requires oxygen therapy requires the same type or amount. Some people need oxygen most hours of the day, while others only need it at night. Others only need oxygen if they’re walking or being active.
There are different types of oxygen equipment, too. The two main types of oxygen delivery are oxygen concentrators and oxygen cylinders or tanks.
An oxygen concentrator is a stationary or portable machine that draws in air and then extracts oxygen. Normal air is only 21% oxygen. A concentrator draws that oxygen out of the air. Portable tanks contain 100% oxygen already. Both devices connect to thin tubes and masks or nasal cannulas, which deliver the oxygen to a person’s nose and/or mouth.
Both cylinders and concentrators are bulky and can weigh anywhere between 3 and 20 pounds. Concentrators need batteries to operate, too. For more information on what oxygen delivery systems are available, visit the American Lung Association. Their website has helpful videos on home oxygen use.
Getting used to life with portable oxygen can be tricky. But as these stories show, portable oxygen also gives you your life back. You can live a full life with portable oxygen, and you might even find that oxygen therapy allows you to do more of the things you love.
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