I was diagnosed with lymphedema last year, while undergoing treatment for pain and swelling issues with my right ankle, knee, and leg. After going over the examination and test results, the doctor asked me about my sleep quality and habits. I didn’t think much about it at the time—I was more concerned about the lymphedema, and I really didn’t think I had any sleep problems.
After my appointment with the Sleep Medicine department, I was sent home with an oximeter test unit, which I had to bring back the next morning. The results indicated that I would need further evaluation—an overnight sleep study.
The overnight sleep study was quite an experience! With all the wires connected to my body, one might have thought I was on life support. Yet, I was surprised when I was diagnosed with severe obstructive sleep apnea.
The good news is that obstructive sleep apnea can be treated by using a continuous positive airway pressure device or CPAP machine. My doctor explained how the CPAP works and the goals we were trying to achieve: to reduce the number of sleep events to four or less per night. When I picked up the CPAP machine and full-face mask, a sleep therapist provided more tips for using the mask and getting it adjusted. As I headed home to start my CPAP journey, I thought this was pretty much all there was to it—put the mask on, turn on the machine and go to sleep. Boy was I wrong!
This is where I have to pause and give thanks to my CPAP cyber-friends on Mayo Clinic Connect. Without them, I would have struggled even more than I did.
The first full-face mask gave me the proverbial “CPAP nose.” Within 30 days I switched to another mask which fit under and up against the bottom of the nose. But I felt like I was suffocating, and had to switch to yet another mask.
Almost 90 days after I started using the CPAP machine, I had to bring it back to Sleep Medicine so that they could download the data and verify the usage for Medicare compliance. It seems I was complying—I used the CPAP at least four hours per night. My sleep therapist was very helpful with tips to help me overcome my CPAP nose issue. For instance, she told me that some of her patients had found a cloth cover for the full-face mask which helped keep the nose from getting chafed. She even wrote down the web address so I could look it up at home.
I’m still not at the end of my CPAP journey, but the road is a lot smoother, and more importantly, I’ve learned how to be my own advocate.
I started the journey with the goal of reducing my apnea-hypopnea index (AHI) to four or less. I realized it wasn’t as easy as I thought it would be. I found an online patient-support community where people were discussing how to reduce events while using a CPAP. Being able to participate in such discussions and learning from the experience of others was extremely helpful.
I learned that many people struggle with the CPAP mask, which was also part of my struggle—I wasn’t alone. This helped me start a discussion with my local sleep therapist on what types of masks others are using, and learn about the variety of masks.
I’m still not sure I have the best mask (for me), but I have one that is pretty close, and it has my numbers around five or less most nights. I’m always searching for tips on improving my CPAP usage by interacting with other patients, and as my CPAP cyber friends would say: Happy Zzzzzs!
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: After being discharged from the Navy, John Bishop worked at IBM as a Customer Engineer in Southern California and Aberdeen, South Dakota. He transferred to IBM in Rochester, MN and worked as a technical writer until retiring in 1997. John began a second career at the Internet helpdesk with KMTelecom, and plans to retire at the end of 2019. If you ask John, “What’s next?” he would most likely say, “Being able to devote more time to my new passion—Mayo Clinic Connect.”