I am trying, really trying to remain upbeat and optimistic, but sadness fills my soul. I have been having great pain and discomfort with my tracheostomy tube. After much research and trial and error, I have discovered I am sensitive to silicone, the very material my trach tube is made of. After several nights of little sleep due to shortness of breath, coughing and breaking out in hives, I decided to ask the medical world for help.
My mom drove me nearly 400 miles back to the large medical facility I visited at the beginning of the month. My emergency department experience was great...but after that everything fell apart. My assigned ICU pulmonologist was clueless about trachs. I had a scope procedure done by the ear, nose and throat department, which was not done with any sedation or numbing agents. Thirty-six hours after the scope procedure, I woke up not being able to breathe through my trach; it was completely clogged with thick mucus and blood. After nine hours of continuous saline nebulizer treatments, the mucus and blood became thin enough to suction out. (This was a bad sign. Thick mucus and especially the appearance of blood usually signifies there is an infection.)
The following day, another pulmonologist was consulted. He suggested doing a full bronchoscopy. So, later in the day, I had a full bronchoscopy...one of the worst experiences of my life. I explained before the procedure I do not tolerate lidocaine well; it causes me to go into a coughing fit which can last up to five hours. I explained I needed to be completely sedated for the procedure, otherwise I would be coughing the whole time. I explained a few other things I learned after having a bronchoscopy done at the beginning of the month. The doctor acknowledged everything I said. When the procedure started, they used excess lidocaine to numb my throat and lungs. I immediately went into a bad coughing fit. The doctor then used a drug I have really bad reaction to, which worsened my breathing and coughing. The doctor said he was not going to use any sedation, but after ten minutes of intense coughing and gasping for breath, the doctor finally gave me a small dose of fentanyl. I coughed and gagged through the whole procedure. The doctor promised he would pull out my trach to look at my trachea to see if the ulcers which were discovered earlier in the month had healed. He also said he was going to change out the trach. Because I was coughing so much, the doctor aborted touching my trach tube. So, the whole reason for having the scope done--to see if the ulcers had healed or worsened and to change my trach tube out with one which does not contain silicone--was not done.
The doctor was excited because when he went down my trachea, he found an infection. He cultured the infection to determine if it was bacterial or viral in origin. I was not surprised he found an infection. I am pretty certain I acquired it several days before when the ENT department performed a scope and most likely reinoculated me with a dormant infection I had acquired at the beginning of August. Moreover, when the ENT department did their scope, NO infection was found in my trachea. The pulmonologist was convinced that all my symptoms were due to this infection and not a reaction to the silicone in my trach tube. My case was switched from the pulmonology department to internal medicine. No further investigations regarding my trach tube and a possible sensitivity to the silicone were done. Once the cultures from the infection came back, I was sent home...still having the same symptoms and now with a bacterial infection.
I am trying to not cry, trying to not be upset, but it is so hard. "Lord, I know this is all a test and all part of Your plan, but please, send relief soon. I am so tired. My trachea is so sore; my breathing is so labored. I am running out of energy to fight through each day. Guide me in the way I should go. Amen."
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