Adjusting to CPAP

Welcome back to the next Thriving not Just Surviving blog post. I’m very pleased to report that I received my CPAP machine and returned to Kansas City last Thursday afternoon. I’ve spent the last few days settling in and adjusting to the CPAP machine at night. So far, it’s going well.

It’s a pretty slick process. The CPAP machine has a hard drive and can transmit data over a cellular network to an app on my phone, which allows me to see different types of advanced sleep statistics. It also transmits data to a sleep therapist who can use the data to make recommendations for adjusting the air pressure and other settings on the machine. My doctor can also see this data and provide recommendations as well.

I’ve now used the machine for three nights and I’ve experienced a significant improvement in my quality of sleep. As you might remember, during the sleep study I was experiencing approximately 36 sleep apnea events per hour. With the CPAP machine that number has dropped to 5-8 events per hour. Although not perfect, I am starting to feel the benefits of an improved quality of sleep.

For the past few months I would normally have to sleep 10-12 hours on both Friday and Saturday nights. Additionally, I would also need to take a 3-4 hour nap on Sunday in order to recover for the upcoming work week. Its still early on, but I don’t feel the need to have that type of sleep regimen now that I’m on CPAP.

Despite the good results, its still weird to be under the age of 30 and be needing a CPAP machine. Apparently sleep apnea can affect anyone at any age. However, similar to lung cancer, most people appear to be at a later stage in life. I laughed as I read through the testimonials of sleep apnea patients using CPAP. According to them, I should now have the energy and confidence to do water aerobics, model trains, and puzzles.

Its great to be back and I’m thankful that my health appears to be much more stable. To be completely honest, its been an overall rough start to 2018. The significant impact of the seizures on my body as well as the unpredictability of their occurrence has definitely taken a toll. I think the toughest part has not been the physical impact, but the mental and emotional impact of being away from home for extended periods of time.

We are nearing the halfway point of 2018 (approximately 26 weeks). To date, I’ve spent 9 weeks total in Kansas City since the start of the year. That’s a staggering amount of time to be away. I was actually hesitant to count up the weeks because I knew it was a lot, but I think it’s a great illustration of what some patients who have to seek medical care in another city are faced with on a daily basis.

Moving forward, we will be working to establish a relationship with a neurologist in Kansas City. This will hopefully create some long-term stability even if the seizures return. However, all my cancer care will continue to be at Siteman Cancer Center in St. Louis.

Maureen and I continue to be blessed with the prayers and support from all the communities in our lives. We cannot thank you all enough.