I have written some about my recent health escapades, but I have kept many things to myself. Now, as my health becomes evident to those around me--as it is not possible to hide my health now that I have a tube in my throat and am connected to a ventilator--I thought I would write about my recent health journey.
In August, while at church, I was talking to a woman for about five minutes. I suddenly became very short of breath and felt very unwell. I had to rest my head down on the table because I was starting to black out. I continued to be short of breath for a few hours afterwards. Since that day, I found myself becoming very tired very easily and was frequently short of breath. Also, I was having trouble sleeping because I was constantly waking up not breathing.
Over the next few months, I was forced to retreat to my bed for more and more hours of the day. I stopped leaving home except to go to church because I was short of breath and extremely tired.
By November, I was constantly short of breath, even at rest, and decided to seek medical attention. The first test my primary care doctor ordered was a pulmonary lung function test. I had a very hard time completing the test because I was so short of breath. I passed out when trying to breathe in against the machine. My lung muscles were so weak, the machine was not able to register a reading for inhaling. Despite my forced vital capacity being only at 20% of normal when sitting up (and dropping to around 13% when lying down), my primary care doctor was not worried. She prescribed inhalers and assured me I would be feeling better soon. My breathing continued to worsen.
Two weeks later, I frantically called the clinic to try to get an appointment to see my doctor. I felt as though I could not breathe. Praise be to God, although I could not see my doctor, another doctor had an opening. As soon as the doctor saw me gasping for breath and struggling to talk, he immediately told me he was going to admit me to the hospital. He told me he was going to start me on non-invasive ventilation which would help me breathe. I was started on the non-invasive ventilation at the hospital and was eventually discharged. At home I started using the ventilator at night and when I felt tired during the day. After several weeks, I was using the ventilator nearly 24/7.
Two weeks after my hospitalization, I had a follow up appointment with the doctor who admitted me to the hospital. Although he was a primary care doctor, he had done extensive training in pulmonology. The doctor bluntly told me I was going to need a tracheostomy in the future. I was shocked and startled by this news. (Sure, I was having trouble breathing, but I was feeling better using the ventilator. No, the doctor was very wrong. I was not going to need a tracheostomy.) The doctor referred me on to a pulmonologist. My breathing continued to worsen.
In February, I had my appointment with the pulmonologist. He immediately diagnosed me with respiratory failure with hypercapnia (high carbon dioxide levels). He then told me I was probably going to need a tracheostomy in the future. This time, the words did not shock me. Although I did not want to get a tracheostomy, it seemed my respiratory muscles were growing weaker and weaker and getting a tracheostomy was in sight. The doctor ordered a few more tests and told me to follow up. At my next appointment in March, my doctor was very distracted and seemed frustrated that the tests he had ordered were not completed by his office. I then had more lung function testing done. Again, I could not inhale enough to get a reading from the machine. The doctor did not share with me the results. He just said the results showed I had severe muscle weakness, and I should follow up in a month. My breathing continued to worsen.
In April, my appointment with my pulmonologist was cancelled the day before my appointment. But have no fear, God was carefully orchestrating everything. I was able to schedule an appointment with one of my doctor's partners who practices in the same pulmonology group for the very next day. The new pulmonology doctor, as soon as he saw me, was alarmed. "You are in respiratory failure! I do not need any tests to tell me this! I can see it just from your breathing. You need to be hospitalized right now! You need a tracheostomy!" I was very grateful for this doctor's concern for my health, but I was not going to be hospitalized. My parents were leaving the next day to go out of town. They would be gone 10 days. From experience, I know you never go to the hospital alone. You never have a risky procedure done and then recover alone at home. No, I politely told the doctor, I would schedule the procedure at a later time when it was convenient for my family. The doctor told me he was scared to send me home because he thought I might stop breathing. I assured him I would be fine. I had been struggling to breathe for quite some time; I could struggle another two weeks.
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