I found myself in unfamiliar territory when my ventilator died

I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work.

Over the years, this machine has become my trusty companion. I can’t fall asleep without it and look forward to going on it when I feel weak. It’s my security blanket, if you will.

Recently, however, something happened that I’d always feared but never expected: My ventilator died just as I was going to bed.

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For many, living with spinal muscular atrophy (SMA) means relying on medical equipment to perform basic functions that other people often take for granted. Equipment like ventilators, feeding tubes, and wheelchairs are necessary tools in one’s SMA toolkit and as lifelines to our well-being.

While it is such a blessing that modern medicine and technology have changed the landscape of rare diseases like SMA, there is always an underlying fear that these machines will fail. On a late August evening, I experienced that fear firsthand.

Facing the unthinkable

The moment my home-care nurse turned on my BiPAP machine, its alarm started blaring. Confused, we thought maybe she’d pushed the wrong button, so we decided to start over. But the alarm sounded again. I could feel the panic rush through me. My body was so fatigued that my breathing was slightly labored. Now, the unthinkable was happening.

Having a panic attack didn’t bode well, considering I was having trouble breathing to begin with. Nevertheless, I couldn’t control my anxiety, as I was in unfamiliar territory. It was close to midnight; would someone be able to replace my machine at that hour? Would I have to pull an all-nighter and expect my body to continue functioning without any rest? Or worse, what if this became an emergency and I needed ventilation fast?

When I doze off without my BiPAP machine, I’m abruptly awoken by my lungs gasping for air. My breaths become so shallow when I’m asleep that I don’t breathe in enough oxygen. Sleeping without the machine was not an option for me.

So, after several conversations with my durable medical equipment company and a push for a replacement as soon as possible, my respiratory therapist delivered a temporary BiPAP at 2 a.m. Somehow, I managed to stay awake until then, but the nagging headache reminded me how sleep-deprived I was. I couldn’t wait to go to sleep.

My BiPAP dying that night was a stark reminder of how vulnerable living with SMA can feel. Even though the fear of it happening again still lingers in my mind, I know I can’t let it overshadow the fact that I have access to these resources that keep me going. So, for now, I will continue to lean on my loaner BiPAP machine until I can get a new one, knowing that it gives me the strength to face another day.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.