A Health Update Part 2--The frantic search

When I got home from my pulmonology appointment, I frantically started searching for information about tracheostomies, things which could be done to avoid getting a tracheostomy and sought advice from others with neuromuscular diseases and tracheostomies. Was there anything which I could do to prevent getting a tracheostomy? I searched and searched the internet for information.

During this time, my symptoms continued to worsen. During the night, I slept only 1-2 hours before I woke up gasping for breath. I would be drenched in sweat and would be hot with a fever. It would take 1-4 hours for my breathing to go back into a slower rhythm and for the night sweats and fever to cease. In the morning, I woke up with a headache, which only continued to grow worse and worse during the day. I was mentally in a constant fog. I had a hard time thinking and following conversations. Words would get jumbled up in my head. I was constantly misunderstanding people. Talking tired me out extremely quickly. So, I often refrained from speaking. This prevented me from saying really mean things to people, which seemed to happen any time I opened my mouth. From the moment I woke up in the morning, I felt as though I was using all my energy to stay awake. I would fight and fight to stay awake, only to fall asleep while reading or surfing the internet. I then would sleep for only 20-30 minutes before I would wake up gasping for breath, feverish and drenched in sweat.

Not finding any data which suggested I should not get a tracheostomy, I reluctantly called the doctor's office the week after my appointment to schedule the procedure for the following week. I kept praying through this all, "Lord, if I am not to have this procedure done, please put road blocks in my way." Although getting the surgery arranged was a slow process, in the end, the procedure was scheduled.

The weekend before my surgery, I posted to a Facebook group for folks with neuromuscular disease. I asked what I needed to know before getting a trach. By God's guiding grace, a man with a neuromuscular disease and a trach since 2001, messaged me. He was of great assistance in answering some of my questions. He described the symptoms he had before getting a trach; they were the exact same as mine. He then asked me if I had ever fallen asleep and no one was able to wake me up. This question startled me. I knew I was having significant symptoms but was I really at the point in my medical condition where my carbon dioxide levels might become so high I might become unconscious? Suddenly the severity of my medical condition shook me to the core of my being. I immediately thought of my friend, Milly, and wept.