Learning to live with both sleep apnea and pulmonary fibrosis

Having 2 conditions that affect my breathing takes a physical and emotional toll

by Ann Reynoso | September 17, 2024

Living with pulmonary fibrosis is already a daunting challenge, but when coupled with a sleep disorder like sleep apnea, the burden becomes even heavier.

Sleep apnea, a condition in which breathing repeatedly stops and starts during sleep, can significantly impact both sleep quality and overall health. For someone with pulmonary fibrosis (PF), where breathing is already compromised, sleep apnea exacerbates the struggle for oxygen, making restful sleep seem impossible.

A vicious cycle

PF causes scarring in the lungs, making it difficult for oxygen to pass into the bloodstream. This leads to symptoms like shortness of breath, coughing, and fatigue. Adding sleep apnea into the mix means that, during the night, the airway becomes blocked, reducing oxygen flow even further. This combination can lead to fragmented sleep, leaving you feeling exhausted, and it can also contribute to the progression of PF.

When sleep apnea is present in those of us with PF, the body is under even more strain. Oxygen levels can drop dangerously low during the night, leading to frequent awakenings and poor-quality sleep. This results in a vicious cycle where poor sleep exacerbates fatigue, further diminishing our ability to cope with the daily challenges of our lung disease.

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After a recent sleep test, I was informed that my heart briefly stopped several times while I slept and that my oxygen levels dropped below 81%. This surprised me.

When breathing stops during sleep apnea episodes, blood oxygen levels drop. This signals the heart to work harder, which can lead to arrhythmias, or irregular heartbeats. Over time, untreated sleep apnea can cause serious complications such as high blood pressure, heart disease, and even heart failure.

Some symptoms of sleep apnea may include frequent awakenings, daytime fatigue, morning headaches, and shortness of breath.

The toll of 2 conditions

Coping with both sleep apnea and PF can be challenging, but incorporating certain lifestyle changes can help improve overall health and manage symptoms. Strategies include using a CPAP or BiPAP machine, adjusting your sleeping position, developing a steady bed routine, quitting smoking, avoiding alcohol before bed, and avoiding sleeping on your back.

The thought of using a CPAP or BiPAP machine fills me with fear. It’s not just about the machine itself, but everything it represents. The idea of needing a device to help me breathe properly while I sleep is a reminder of how much my health has changed and how much control I’ve lost over my own body.

The fear of feeling confined is very real. I worry about whether I’ll ever get used to it. Despite all this, I know I need to confront the issue. People with sleep apnea and PF use these machines every night and find relief. I hope that, in time, I can, too. But for now, the fear is real, and it’s something I’m working to overcome.

Living with two serious health conditions can take a physical and emotional toll. Sleep deprivation can lead to increased feelings of frustration, anxiety, and depression. Having a strong support system is vital. Whether it’s family, friends, or support groups, talking with people who understand your struggles can provide much-needed emotional relief.

Learning to live with sleep apnea and PF is a journey of balancing two chronic conditions. While it may feel overwhelming at times, with the right treatment and support, it can be bearable. Prioritizing sleep and working closely with your healthcare providers are key steps in improving both your sleep quality and your overall quality of life.

Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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About the Author

Ann Reynoso Ann Reynoso lives in Alvin, Texas, working and volunteering as a patient advocate for those with disabilities and communities that struggle with inequalities in health and social care. She was diagnosed at age 53 on December 2019 with lymphocytic interstitial pneumonia and pulmonary fibrosis. Her wonderful support team includes her husband and daughter. She writes both to regain a sense of achievement, post-diagnosis, and to make sure no one feels alone in their journey of navigating rare illness.

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