Fears of the BiPAP

Living with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been significant advancements in pulmonology for this rare condition. However, the topic can still be quite intimidating.

Resisting the use of a BiPAP machine

For many years, I resisted the idea of using a breathing machine at night. As a teenager, the concept felt restrictive, invasive, unproductive, and even unattractive. I can honestly say I had a fear of becoming dependent on a machine during the day. That just wasn’t something I was ready for.

But I want to dispel that false idea immediately. Just because you need a machine at night does not mean you will automatically need one during the day. And even more so if you do need one during the day, that is absolutely OK!

A tragedy showed me that I need to care for my lungs

I had undergone numerous sleep studies and lung capacity tests, fully aware of my declining numbers, but it wasn't until my brother's passing that I began to take assisted breathing more seriously.

Without delving too deeply into my brother's story, the underlying issue was a "perfect storm" that compromised his oxygen levels. His passing took place at a high-altitude ski resort, and although I don't see myself in a similar situation, I recognized the importance of taking care of my lungs.

Accepting the BiPAP for my well-being

I started the process of getting a BiPAP machine, having had one as a teenager but never committing to using it. No doctor will force you to do anything; I had to accept that I needed it for my own well-being.

Battling with insurance was a challenge, as they initially wanted to provide a CPAP machine. Through an online community, I learned this wasn't ideal for someone with a neuromuscular disease. After fighting the system, finding a new pulmonologist, and redoing my sleep study, everyone, including insurance, agreed that a BiPAP machine was right for me.

My energy levels are improving

Receiving the machine was an emotional moment. I was excited to sleep better and feel more energized during the day, but adjusting to a new sleep routine wasn't something I looked forward to. Thankfully, these machines have come a long way – they're now less cumbersome and noisy. As for their unattractive appearance, that's a topic for another post. What matters is that my spouse wants the best version of me, and for that, I need a little help when I sleep.

After using the BiPAP machine for over a month, I can honestly say it has made a tremendous difference in my rest and daily energy levels. The doctors have already let me know of the amazing results they’re seeing.

Adjusting to the machine

Adjusting to the machine was challenging at first, but I quickly found ways to make it more comfortable. I experimented with different masks and accessories until I found the perfect fit. Now, I'm much more comfortable sleeping with the BiPAP machine, and it has become a natural part of my nightly routine.

My journey to accepting and embracing the BiPAP machine has been full of ups and downs. But ultimately, it has allowed me to take better care of my lungs and improve my overall quality of life. I hope my story inspires you to face your challenges with courage and determination. Remember, you're not alone, and sometimes all it takes is a little help to make a big difference in your life.