ST. LOUIS (KMOV.com) -- Millions of people who struggle to breathe while they sleep are facing a tough choice amid a recall where some are being told to keep using CPAP machines that could potentially put their health at risk.

In June, Philips recalled certain CPAP devices. The company didn't start replacing the machines until August.

The recall centers on foam used inside the machines to reduce noise and vibration. According to Philips the foam can "degrade" and some people may inhale chemicals that can cause cancer.

"Am I going to get some kind of disease from it? Could I get cancer? I don't know," said Patrick Quinn, who's been using a CPAP since 2014. "I shouldn't have to lay my head down on the pillow every night and wonder about that."

Quinn said he needs the machine to sleep at night, so until he can get a new one, he can't stop using his recalled device.

"I have epilepsy and if I don't get six, seven, eight hours of sleep a night that can trigger seizures," Quinn said.

While the recall is now months old, Quinn said he just found out from a friend.

"I was just dumbfounded that I would find out that way rather than Philips calling me, emailing me," Quinn added. "It infuriates me."

In November an investigation by the Food and Drug Administration (FDA) discovered Philips started getting complaints about the issue in 2015. FDA investigators also found that company executives were made aware of the issue in January 2020, but waited more than a year to take "corrective actions."

Doctors and nurses who are now trying to help their patients are playing catch up.

"For us there was a lot of uncertainty because we did not have a lot of information at the time the recall was announced," said Loretta Colvin, a nurse practitioner at SSM Health who specializes in sleep apnea. "Right now we don't know much about the potential risk of continued use of the machines because it's just a new recall."

Colvin said initially the guidance from Philips was to stop using the affected devices. She said that changed in recent weeks and Philips is now telling people to contact their health care provider to determine what's best for them.

Colvin said in some cases people can stop using the devices, but for others the risk of not having it is too severe.

"What we're going to advise them is going to depend on their severity of sleep apnea," Colvin said. "We worry about serious health problems like heart failure, atrial fibrillation, strokes, heart attacks."

Colvin is seeing patients struggle to get new machines as the combination of the recall and pandemic supply chain issues cause shortages.

"It's beyond our control," Colvin said. "We're hoping for a solution but the pandemic is going to limit the options."

That's something Quinn already learned as he now faces a months long wait for a new machine.

"They're telling me that it could be three to six months to get a new CPAP machine," Quinn said.

There are other companies that make CPAP machines. However, many people affected by the recall rely on insurance to cover the cost of their machine and that limits how often they can get a new one.

Out of pocket costs for a CPAP can run upwards of $1,000.

"Rock, hard, place, I'm in the middle, that's how I feel," Quinn said. "I want to see everyone get a newer version, one that is FDA trusted and approved."

Philips said it expects to finish replacing all of the affected CPAP machines by September 2022.

Anyone with a Philips CPAP can check if it is on the recall list by clicking here. The same link guides people with an affected device to register it for a replacement.

Health care providers are also warning of patients being scammed. They're reminding people to look out for unexpected phone calls regarding the recall that include requests for personal or health information. Providers also say to be cautious of any referrals to sources for information other than Philips and the FDA site.

When in doubt, providers are advising patients to verify caller information by requesting a call back number and then verifying that against their records or the company website.

You can find more information about the recall on the FDA's site found here.

Copyright 2021 KMOV. All rights reserved.

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