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.
