As I sit at church in my corner next to the wall, a friend I have not seen in nearly a year warmly greets me. "You look great! It is so wonderful to see your face! You look like you are doing so well!" As my friend's words swirl through my head, I am suddenly reminded of this last year. The last time my friend saw me was when I had a giant full face mask strapped to my head, and I was severely laboring to breathe. Was it really just a year ago I was using non-invasive ventilation (BiPAP) to breathe?
On December 5, 2016, my life changed forever. After struggling to breathe since mid-August, I suddenly felt as though I could not breathe. I felt as though I was using every muscle in my body to take the tiniest breath. In a panic, I called the medical clinic. Praise be to God, a doctor very knowledgeable in pulmonology was assigned to be my doctor. The physician took one look at me and told me he was going to admit me to the hospital. My Mitochondrial Disease was affecting my respiratory muscles. I was going to need to use a BiPAP machine to help me breathe.
After being admitted to the hospital, I spent a terrifying night trying to learn how to breathe while a machine was forcing air into my lungs. As tired as I was, I simply could not relax and let the machine give me the needed breath support. After a few short hours of using BiPAP, I had the respiratory therpatist disconnect me from the machine. Thankfully, my machine settings were recorded, and I was able to be discharged home with my own machine. My doctor instructed me to just use the BiPAP machine at night and anytime I felt as though I could not breathe. Very quickly, I found myself not being able to breathe on my own. I soon was using the machine more and more.
On January 1, 2017, I started using BiPAP 24/7. I so clearly remember this day. It was a Sunday. I did not have the respiratory muscle strength to breathe on my own while attending church services. Filled with much sorrow and anxiety, I used the BiPAP machine during service. I was so embarrassed. I felt like a space alien wearing a huge full face mask and having to have a machine help me breathe. As folks were joyously celebrating the new year, I was lamenting that this day would commemorate a new progression of my disease.
As I struggled to breathe during the next several months, my BiPAP mask was always strapped to my face. As much as I wanted to talk to people, which required me to remove my mask, I simply did not have the muscle strength to breathe on my own. I remained quiet for most of the day. At church, folks would often talk to me. I would only respond with a head nod or perhaps a one word response. I knew my respiratory muscles were failing. I knew it was only a matter of time before I needed to get a tracheostomy and use invasive ventilation to breathe.
During the month of April, my respiratory muscles were completely exhausted. I could only sleep about an hour before I would abruptly wake up drenched in sweat, shaking and gasping for air as my body tried to desperately rid itself of carbon dioxide which had built up in my body during my brief time in slumberland. I kept praying during this time that God would give me strength. I kept praying that God would provide the medical means to help me breathe.
At the end of April, the day before my pulmonology appointment, the clinic called to inform me my doctor had to cancel my appointment. On the verge of tears, the receptionist informed me that another pulmonologist could see me at the clinic the following afternoon. Praising God, I gratefully agreed to see a different pulmonologist. The moment the pulmonologist saw me in his office shaking with fatigue and severely laboring, using every muscle possible to breathe, he exclaimed, "You are in respiratory failure! I do not need any test to tell me this. You need to be hospitalized. You need a tracheostomy now!" As much as I appreciated this doctor's concern, I was not ready at that moment for a tracheostomy. I needed time to pray; I needed time to research getting a tracheostomy; I needed time to digest this information.
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