May 10, 2017. It’s a day that will be forever engrained into my life as a major turning point. In the months leading up to that day, I had been sick with four separate severe upper respiratory infections. The last turned into pneumonia. I was also 20 weeks pregnant with our “surprise” baby. And because of my disability, respiratory illnesses are inherently dangerous for me and need to be treated carefully and quickly.
Hospital + Ventilator
When I developed pneumonia, I decided I was no longer comfortable treating myself at home and went to our local hospital. I was immediately admitted.
The first day, I was supposed to be receiving breathing treatments every 3 hours, but the staff let me fall through the cracks and I went 12 hours without a treatment. Breathing became increasingly more difficult. Then, all of a sudden, I felt like I couldn’t take a breath at all. I started panicking, and my husband frantically got a respiratory therapist into my room to assist me. My body went into respiratory failure. They put me on a machine called a non-invasive ventilator. It’s a machine that provides pressure-based air support through a mask I wear on my nose.
After the machine (called a Trilogy) was placed on me, and I relaxed for a few minutes, I felt an overwhelming sense of calm. I ended up falling asleep for almost 24 hours and let me tell you, it was glorious. I hadn’t slept but maybe 6 hours within the previous week because my body was fighting so hard to just survive.
Relief + Worries
The next few days, I started to feel better.
My pneumonia cleared and I was able to breathe comfortably with the support of my Trilogy. That allowed my body and mind to actually rest. Because I was pregnant and still had other medical concerns, including spinal muscular atrophy, my team of doctors transferred me to a bigger hospital in Denver until I delivered my baby. I was ok with that. I had delivered my first daughter there and was comfortable with the level of care they could provide. By the time I gave birth to our daughter, I had spent nearly four consecutive months in the hospital. I had a lot of time to just think (or rather OVER-think) while I was stuck in my bed.
I was still adjusting to having to wear a mask on my face at all times and I was scared about how it might negatively change my life.
- The ventilator hold me back from doing things I enjoyed doing?
- People look at me differently?
- My kids be scared of it?
- My husband still find me attractive?
- I be comfortable with my appearance?
Joy + Confidence
After leaving the hospital, I started realizing just how wrong I was in those fears. Not only did my vent NOT hold me back from anything, it’s given me the strength and stamina to do even more. I no longer require supplemental oxygen. That means no more lugging around cumbersome tanks and worrying about running out while away from home.
It also makes traveling much easier. My ventilator is FAA approved; whereas, oxygen tanks were not permitted on airplanes. I was able to take my first flight in several years (Vegas, baby!) and it was one of the most memorable vacations I’ve been on.
Sure, I got to see Thunder from Down Under. 😉 But more importantly, I had the energy to stay out into the wee hours of the night and really enjoy it. I got a lot of individual attention from the guys in the show afterwards and boy did that give me a massive confidence boost. Here I was amongst a ton of beautiful and able-bodied women, but the guys were chatting ME up.
None of them seemed to notice the mask as we joked around and took selfies. And then, to add a cherry on top of an already fantastic night, my favorite of the group even asked to add me on social media and interacts with me often.
Then + Now
My relationship with my husband has only gotten better since my hospital stay, and he comments on how much happier and healthier I seem overall. I spend more time now doing things I enjoy – volunteering, playing with my girls, traveling. I’m even enrolling back in college to complete my degree.
Learning how to adapt to my “new normal” on a ventilator the past two years has been tough at times. But I can say with certainty, it is nothing short of a miracle that I was given a new lease on life. Using better breathing support is something I should have done years ago. If this experience taught me anything, it’s that change is inevitable and it can be scary – but it can transform your life in unimaginable ways. I’ve also learned that advocating for myself and others to receive the best level of healthcare and support available is a true calling for me.
I share my story in hopes that it can encourage others facing difficult life changes. Embrace them with courage and confidence because you never know what incredible experiences await in the future.