Changing My BiPap Machine

From childhood onward, change has been a constant challenge for me. Every time I needed a new wheelchair or medical device, anxiety would grip me tight. It always felt like a harbinger of something going wrong or my spinal muscular atrophy (SMA) worsening. Even though that wasn’t always the case.

Changes impact my breathing

Last year, I received a diagnosis of sleep apnea and began using a BiPap machine. The process of finding a suitable machine proved to be quite challenging. I tried or was shown most of the machines, but they lacked the level of adjustability I needed for accuracy. It felt like they compelled me to breathe in a certain way, which was extremely cumbersome.

After trying out several machines, I finally found one that allowed me to make the necessary adjustments to suit my needs. It took weeks of experimentation to find the optimal settings that were both effective and therapeutic, though.

Fortunately, I had a respiratory therapist who went above and beyond, along with a pulmonary specialist who supported her efforts to ensure my comfort throughout the process.

Equipment failure leads to considering another change

About three months ago, my Evo Trilogy stopped transmitting data to my respiratory therapist and pulmonary team. We attempted to resolve the issue by replacing the transmitter, but unfortunately, the problem persisted. Since then, my respiratory therapist has had to make monthly visits to manually download and reset the data, which frustrates both of us. Our schedules don't always align, making it inconvenient. Despite our efforts, the company that produces the machine has been unable to offer any other solutions. As a result, we have the option of continuing these monthly visits or considering switching to a different machine altogether.

Interestingly, other patients in my area have faced the same dilemma and have chosen to switch to a different machine due to the identical issue.

It's as if I'm back at the starting line with the BiPap. Anyone familiar with BiPap machines understands how each one can feel slightly different from the rest. Moreover, for those with SMA, the sensitivity to even the smallest changes is well-known. I've often pondered why change is so challenging for us. What is it about our condition that makes adaptation difficult?

Change brings uncertainly

Change feels difficult because uncertainty pervades every aspect of my daily life. I never know what my body will allow me to do from one day to the next. My pain levels fluctuate constantly, sometimes changing by the hour. Some days, I can find comfort in my chair within seconds, while others, it's an ongoing battle.

Nothing remains consistent for me on any given day. When another aspect of my life slips out of my control, it overwhelms me and triggers anxiety. I believe many others with SMA can relate to this feeling. Losing control over one's life is challenging. It wears you down more and more the longer you endure it.

We face the physical uncertainty of our disease, grapple with its mental aspect, and also deal with uncertainty about medical equipment. Even a small change can feel catastrophic to me, disrupting my equilibrium for an extended period.

It may sound dramatic, but for me, it truly is. Sleep is already unpredictable for me most nights, so knowing that my BiPap settings are being altered makes me anxious about the potential impact on the little sleep I manage to get until we recalibrate the settings just right.

Pushing through change to persevere

Switching my BiPap machine disrupts my daily routine, which may not seem significant to others, but it mentally and physically drains me. My energy depletes before I even get out of bed, and facing a new challenge can be truly exhausting, even something seemingly small and simple.

As always, I'll likely shed a few tears and persevere until I can adjust the machine to where I need it. Sometimes, that's just what you have to do; push through.