Patients with sleep apnea are frustrated by the memory of the CPAP machine

A voluntary withdrawal Of the millions of CPAP breathing machines, which are primarily used to treat sleep apnea, many users wonder if they have inhaled cancer-causing toxins during sleep.

At least 25 million American adults have sleep apnea, a potentially serious sleep disorder in which breathing stops and begins repeatedly throughout the night, preventing them from sleeping well. A continuous positive airway pressure, or CPAP machine, pushes a constant stream of air into the user’s nose and mouth, keeping the airways open.

But now CPAP users have the option of using a machine that, according to the company, could harm their health or not, which means they won’t sleep a decent night.

In June, manufacturer Philips voluntarily recalled millions of its popular DreamStation CPAP machines due to possible health effects.

Philips said the anti-damp foam used in the DreamStation “can degrade into particles” and “remove gases … chemicals.” The FDA says these people’s breathing “can cause serious, life-threatening injuries” or “cause permanent deterioration,” from irritation to asthma … or even “toxic effects or carcinogens “.

“It’s caused a lot of anxiety,” said Dr. David Claman, medical director of the University of California, San Francisco’s Sleep Disorders Center. He says many of his patients have remembered machines.

Anna Werner, CBS News’ consumer research correspondent, asked, “What do you tell them to do to your patients?”

“I advise more serious patients to stay on CPAP. Then I’m to some extent in milder cases, letting them choose, because I also feel uncomfortable saying I can’t know that’s safe.”

Werner heard some frustrated people suffering from sleep apnea, including James Colbert, who described his life 13 years ago before he started using a CPAP machine (including, for the past two years, the Philips DreamStation): “There were moments when I would literally fall asleep halfway through talking to someone because I was so exhausted from not going to sleep the night before. ”

Ever since I used CPAP, Colbert said, “In fact, I woke up refreshed and could go through the day with, you know, a ton of energy that I needed to work or, you know, to spend time with my family”.

Jozefa Kozyra, of Lehighton, Pennsylvania, relied on her DreamStation to sleep so she could care for her son Kamil, who has muscular dystrophy all day.

Kamil told Werner, “I need to bathe, get dressed, get food and other exercises to do during the day.”

But since the withdrawal, he said his doctor advised him no to use the machine, and she is struggling without it. “I’m very tired, I’m very slow,” Joseph said.

Werner asked, “How long do you sleep without the machine?”

“When I don’t have a machine now, two hours, three hours,” he replied.

Her son said Medicare rejected her for a spare machine and she can’t afford to spend hundreds of dollars to buy a new one.

Kamil said: “He called his insurance and Medicare several times, and they say, because five years have not passed, although it is not his fault, they are not willing to pay for a new machine.”

Now Philips says it will “replace or repair devices” … “within about 12 months” once the FDA approves a solution.

It is unclear how many patients have suffered health effects; the company said it received complaints about 0.03 percent of its machines by 2020, including some that the FDA sent about “the presence of waste / black particles” on some machines.

Philips said its tests revealed “possible risks,” which raises questions for Dr. Claman: “Is this just the tip of the iceberg, or is that all there is?”

As for James Colbert, he said the risks of not carrying the machine outweigh the possible unknown health effects, so he continues to use his own.

“I can’t afford not to use it, because I would sleep very little,” Colbert said. “And if I slept without him, I would stop breathing so many times over the course of the night.”

But he has a message for Philips: “To tell me it can take up to a year? It’s a year that could put me in danger,” Colbert said. “People just can’t afford to wait 12 months to get a resolution.”

Colbert has also joined a lawsuit against Philips, he said, to urge them to act more quickly on the issue.

Philips did not respond to CBS News’ request for comment on the lawsuit. (In April, Philips came out with a new machine, the DreamStation 2, which it says is not affected by that memory).

Connecticut Sen. Richard Blumenthal is asking for answers on how many people are affected by the withdrawal and what Philips is doing to help them.

There may be another potential problem here: many people with machines use an ozone cleaning system to clean them and this can degrade sound reducing foam more quickly.