Why You Need to Keep Current With Your Sleep Doctor

How many of you don’t keep up with all of your specialists? I have spinal muscular atrophy, which is a form of muscular dystrophy, in addition to sleep apnea. Spinal muscular atrophy (or SMA for short) takes precedence in my life, so I’ve been very diligent in seeing my neurologist on a regular basis.

I am only in my mid-40s, and having to go see a multitude of specialists on top of my family doctor is not very high on my list of things to do.

So what’s my point? Well, I haven’t seen my sleep specialist in over 15 years.

My CPAP died

In September 2020, I noticed my 15-year-old CPAP machine wasn’t sounding right. I called to make an appointment with my doctor. Surprisingly, I was still in their system. I took the earliest available appointment, which was about 3 weeks out.

About a week after I scheduled my appointment, my CPAP died. I had tested fate for too long. My appointment was still 2 weeks away. I knew I couldn’t go that long without my CPAP.

I called the office and explained my situation. But due to the fact I hadn’t seen my sleep specialist in more than a decade, there wasn’t much he could do for me. I also had new insurance, which compounded my predicament.

The scramble for a prescription

The office put me in touch with a medical supply company that rents CPAP machines. They needed a prescription from a doctor. My sleep specialist wasn’t able to write me one since he hadn’t seen me in such a long time.

Luckily, my family doctor took mercy on me and wrote the prescription. But, unfortunately, this whole process started on a Friday, and I had to go the whole weekend without a CPAP.

I could not go without CPAP any longer

Monday morning, I was coordinating with the medical supply company trying to expedite this transaction. They normally send the machine via a carrier (UPS or Fed Ex), but I didn’t want to wait that long. I explained to them that I had already gone 4 nights without CPAP, and I asked them to let me pick it up at their distribution center that day. I was grateful that they made an exception, especially during the pandemic.

Renting a machine wasn’t cheap, and insurance wouldn’t cover it since I haven’t had a sleep study in 15 years. However, I am glad this option was available to me and I’m lucky that I am in a position to afford the extra expense.

Feeling the effects of going without my CPAP

The 4 nights that I went without CPAP were hard for me. I would only doze off for an hour at a time during the night. I spent the majority of the night tossing and turning, which is extremely rare for me.

By the second day, I had a really hard time concentrating, and if I wasn’t actively doing something, I was fighting to stay awake.

I want to encourage everybody to be sure that you keep up with your regular appointments with your sleep specialist so that you can avoid the scenario that I dealt with. We must not procrastinate when it comes to our health.