Let’s talk about and normalize sleep apnea
The night breathing condition is common in pulmonary hypertension patients
I can see the marks on my face most mornings when I look in the mirror. In my mind, the reddish lines and indentations look like well-worn train tracks. Lately, two small circular markings have made themselves known on each side of my nostrils.
Those marks are from the straps of a face mask worn to treat sleep apnea with a CPAP (continuous positive airway pressure) machine, to facilitate better breathing and sleep throughout the night.
Sleep apnea affects roughly 30 million people in the U.S. Yet according to the American Medical Association, only 6 million people have a formal diagnosis of it. Last month, news broke that U.S. President Joe Biden uses a CPAP machine to treat his sleep apnea. The White House confirmed the president’s usage after reporters noticed marks on his face left by the straps that hold the mask in place.
According to the Mayo Clinic, sleep apnea is a “sleep disorder in which breathing repeatedly stops and starts” throughout the night. There are different types of sleep apnea, and the condition can lead to serious health complications when left untreated and undiagnosed. It can also be a comorbidity in patients with pulmonary hypertension (PH).
Last November, PH News highlighted a study that found more than 1 in 3 PH patients had obstructive sleep apnea (OSA). That article also shared the recommendation from researchers that “more attention should be paid to OSA in the management of PH.”
I’ve filled this column with anecdotes, emotions, stories, and perspectives about my journey over the last seven years. It’s been a wild ride of symptom flare-ups, medication side effects, and doing the most with the energy I have on any given day. What I haven’t given much voice to is how managing obstructive sleep apnea shapes my PH diagnosis.
There are a few reasons why I haven’t shined a spotlight on this disorder when I talk about pulmonary hypertension. Effectively managing sleep apnea has been one of the most difficult adjustments for me, to the point where I sort of rejected it outright from the start.
After my PH diagnosis, I had to complete a sleep study to monitor the severity of my case and see how many events per hour — moments when my breathing pauses while sleeping — I experienced, which helped determine the proper airway pressure levels for the CPAP machine. Calibrating the correct level ensures that the machine pushes enough air pressure to keep one’s airways open while they’re asleep.
Participating in the sleep study was small potatoes compared with what came next.
If at first you don’t succeed, try again and again
The CPAP mask and I were like oil and water; we just didn’t want to emulsify to become the perfect vinaigrette. Given the tightness of the mask, the intensity of the air moving through it, and the humming of the machine, sleeping felt impossible. A restful night’s sleep seemed elusive. I’d try to use the machine in good faith for a few days on and off, before frustration and anger would lead me to sleep only with my oxygen concentrator.
I’m well aware that this approach was not sustainable and that my noncompliance didn’t please my pulmonologist and new sleep doctor. (You can’t have a comorbidity without adding another doctor to the roster.) My medical team recognized the level of adjustment required to benefit from the CPAP treatment while also reminding me of the serious health concerns that can occur when a condition like obstructive sleep apnea goes untreated.
We all agreed that I’d continue to try and try again. I swapped out different styles of masks, calibrated different airway pressure levels, and tried to outsmart my own stubbornness in refusing to see how treating sleep apnea connected to managing PH.
Normalize treating sleep apnea
Plain embarrassment is another reason I struggled to embrace the CPAP machine despite its benefits. It’s also why I didn’t write about it.
We live in a world that places plenty of stigma on health struggles, chronic illnesses, and disabilities. That stigma and the resulting ableism can feel overwhelming at times, while also reminding us why it’s so important to normalize conditions like sleep apnea. The media, whether it’s film, television, journalism, or digital and social platforms, is one of the main lenses through which society receives information, and it offers the potential to break stereotypes, increase representation and inclusion, and normalize the diverse aspects of human existence.
When I read about President Biden, I thought of the marks on my own face now that I regularly use my machine. I knew this moment could help raise awareness about sleep apnea, including its connection to PH. It gave me the push I needed to write this column.
Follow Mike Naple on Twitter: @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
About the Author
Marina Simon
I am using a CPAP. It was a pest for 1&1/2 years. A long time to adept to it. Always told my Pulmonologist how hard it is to sleep with. He encouraged me to try my best. Right now it got so far that I cannot fall asleep without it. For all those who find it hard, good luck! One day you will be thankful that you continued with it.. Take my doctors advise, it does get much easier the more you try!