My respiratory therapist (RT) recommended a physician who worked closely with my durable medical equipment company. She worked with individuals who had tracheostomies and ALS. My RT thought this doctor might be able to help out.
When scheduling my appointment, I was amazed that the doctor took time out of her busy schedule to review some medical records my doctor sent to her office. Upon reviewing the information, the physician wanted to see me the following week! The doctor actually rearranged her schedule so that I could get an appointment in her completely booked schedule!
At my appointment, the physician was shocked at my rapid breathing. She knew something was wrong and said she needed to admit me to the hospital to run some tests. Grateful for the assistance, I agreed to be hospitalized. The doctor then said, "I'll see you at the hospital." I was a bit baffled by this statement. It was nearly 3 p.m. By the time I would get to the emergency department (ED), get checked in and triaged, and then taken back to a room, it would be after the doctor would probably leave for the day. I did not believe the physician's words.
At 6:30 p.m., I was lying in a bed in the ED, and to my shock, here is my doctor! The physician asks what has been done. Although I have been at the ED for three hours, I had yet to see an ED physician. My doctor clicked through my ventilator settings and was appalled. "Who set this machine up for you? These are all wrong!" She continued by going through each setting and explained what each setting meant and what a person with neuromuscular disease should have as the setting. Very soon, my breathing was slowing down, but I was fighting hard against the machine because my lungs had been used to the wrong settings.
Finally, an ED doctor came into my room. My physician gave the ED doctor a lecture about my case and what she wanted to accomplish during my hospitalization. It was amazing listening to my doctor take such control over my case. Soon, I was admitted to the hospital and began my stay in the intensive care unit (ICU).
The precise details of my hospitalization are rather hazy. I remember my doctor, who I will call Dr. H, set up a number of tests to examine the function of my lungs and lung muscles. Dr. H discovered my diaphragm muscles were almost completely paralyzed. This meant when I deflated the cuff on my tracheostomy tube, which broke the closed circuit between my lungs and the ventilator, I was using my accessory breathing muscles to breathe and talk. Dr. H severely scorned me for deflating my cuff. "You are only using your accessory muscles! Your diaphragm is nearly paralyzed. The only way you can breathe and speak with your cuff down is because you are young. If you were my age, you would die if you tried to breathe with your cuff down. Keep your cuff up! You are going to burn out your respiratory muscles!"
As well meaning as Dr H was, I did not obey her orders. With Mito, if you do not use your muscles you lose them. If you use them, you might lose them anyway. I was not going to lose my ability to speak to save muscles I was going to lose anyway. Whenever my accessory breathing muscles stopped functioning, then I would stop deflating my cuff and thus lose the ability to speak. Until then, I am going to talk as much as I want, or as much as I can until I become too fatigued and have to inflate my tracheostomy cuff for full ventilator support.
Dr. H was also a funny character. She was very devoted to her career and only seemed to know medical lingo. Moreover, she often only used abbreviations. I could converse with Dr. H, but when she started speaking just letter abbreviations, I would have to stop her and ask her to explain her abbreviations. Dr. H would try to involve my mom in the conversation, but my mom was always lost. One time, Dr. H stopped for a few moments to speak with another doctor who stepped into my room. My mom softly tugged at my arm, "What is the doctor talking about? I can't understand her." I nearly start laughing and say, "I'll explain everything when she leaves." And that's exactly what I did because my mom could not follow the constant medical terminology the doctor used.
The one thing which stood out the most about Dr. H was her commitment to her patients. Although I was under the care of another critical care physician while in the ICU, Dr. H always came to visit me and directed my case. One the first day of my hospitalization when the clock hands showed the time as being 8 p.m., I assumed Dr. H was not going to visit me. But at 9:30, Dr. H entered my room. "Dr. H! What are you doing here!? Go home! I am not that important. Go to bed!" Dr. H firmly assured me she said she would visit me in the hospital. And now she was here. She told me a number of things came up for her during the day and this was the first time she could come to my room. I was shocked by Dr. H's dedication, but I also felt quite guilty. She should be home. She should be resting and not worrying about me.
Link to Part Two click here
At my appointment, the physician was shocked at my rapid breathing. She knew something was wrong and said she needed to admit me to the hospital to run some tests. Grateful for the assistance, I agreed to be hospitalized. The doctor then said, "I'll see you at the hospital." I was a bit baffled by this statement. It was nearly 3 p.m. By the time I would get to the emergency department (ED), get checked in and triaged, and then taken back to a room, it would be after the doctor would probably leave for the day. I did not believe the physician's words.
At 6:30 p.m., I was lying in a bed in the ED, and to my shock, here is my doctor! The physician asks what has been done. Although I have been at the ED for three hours, I had yet to see an ED physician. My doctor clicked through my ventilator settings and was appalled. "Who set this machine up for you? These are all wrong!" She continued by going through each setting and explained what each setting meant and what a person with neuromuscular disease should have as the setting. Very soon, my breathing was slowing down, but I was fighting hard against the machine because my lungs had been used to the wrong settings.
Finally, an ED doctor came into my room. My physician gave the ED doctor a lecture about my case and what she wanted to accomplish during my hospitalization. It was amazing listening to my doctor take such control over my case. Soon, I was admitted to the hospital and began my stay in the intensive care unit (ICU).
The precise details of my hospitalization are rather hazy. I remember my doctor, who I will call Dr. H, set up a number of tests to examine the function of my lungs and lung muscles. Dr. H discovered my diaphragm muscles were almost completely paralyzed. This meant when I deflated the cuff on my tracheostomy tube, which broke the closed circuit between my lungs and the ventilator, I was using my accessory breathing muscles to breathe and talk. Dr. H severely scorned me for deflating my cuff. "You are only using your accessory muscles! Your diaphragm is nearly paralyzed. The only way you can breathe and speak with your cuff down is because you are young. If you were my age, you would die if you tried to breathe with your cuff down. Keep your cuff up! You are going to burn out your respiratory muscles!"
As well meaning as Dr H was, I did not obey her orders. With Mito, if you do not use your muscles you lose them. If you use them, you might lose them anyway. I was not going to lose my ability to speak to save muscles I was going to lose anyway. Whenever my accessory breathing muscles stopped functioning, then I would stop deflating my cuff and thus lose the ability to speak. Until then, I am going to talk as much as I want, or as much as I can until I become too fatigued and have to inflate my tracheostomy cuff for full ventilator support.
Dr. H was also a funny character. She was very devoted to her career and only seemed to know medical lingo. Moreover, she often only used abbreviations. I could converse with Dr. H, but when she started speaking just letter abbreviations, I would have to stop her and ask her to explain her abbreviations. Dr. H would try to involve my mom in the conversation, but my mom was always lost. One time, Dr. H stopped for a few moments to speak with another doctor who stepped into my room. My mom softly tugged at my arm, "What is the doctor talking about? I can't understand her." I nearly start laughing and say, "I'll explain everything when she leaves." And that's exactly what I did because my mom could not follow the constant medical terminology the doctor used.
The one thing which stood out the most about Dr. H was her commitment to her patients. Although I was under the care of another critical care physician while in the ICU, Dr. H always came to visit me and directed my case. One the first day of my hospitalization when the clock hands showed the time as being 8 p.m., I assumed Dr. H was not going to visit me. But at 9:30, Dr. H entered my room. "Dr. H! What are you doing here!? Go home! I am not that important. Go to bed!" Dr. H firmly assured me she said she would visit me in the hospital. And now she was here. She told me a number of things came up for her during the day and this was the first time she could come to my room. I was shocked by Dr. H's dedication, but I also felt quite guilty. She should be home. She should be resting and not worrying about me.
Link to Part Two click here
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