Tracheostomy. This is a word not many people think about. Even when it is thought about, it's not much and it is viewed similar to the movies or tv. Most people don't think they will ever have to get up close and personal with it, even if their doctor says it might be a possibility in the future. That's how I was, until my doctor told me that it could no longer be put off. It was like a slap in the face. I was shocked. I didn't thik it would happen, or if it did then it would be way in the future. But to really understand my story, you need to hear a little of my back story.
I have never been an average person. As a kid and a teen, I always seemed to need more sleep than my peers. I have always been sensitive to temperature changes, and have never been able to handle the heat very well. I got married to my wonderful husband, Ben, at an early age, and we had our oldest daughter right away. Things were good, but that overwhelming fatigue seemed tto be lurking in the background. A few years later came our youngest daughter, and boy was she a spitfire. She came into this world screaming her annoyance, and she had a very healthy set of lungs. Needless to say, I didn't have time to be tired, and I couldn't afford to rest. On top of 2 young children, I went to classes and got my GED and decided it was the perfect time to go to work. I started working at Walmart, in the deli. I would go in around 1, work until 11, or until we were done, go home and sleep until our very early rising youngest woke up. Then it was time to start the day over again. It wasn't long before this routine caught up with me. I started having very painful muscles and joints. It got to the point to where I could hardly walk, and I also had a rash develop on my trunk and legs.I was taking 4 ibprophen every 4-6 hours(definitely don't ever do this) and trying my best to keep up with life. I eventually ended up with a stomach ulcer and landed in the hospital. Three hospital stays later I was diagnosed with Crohn's disease. Crohn's disease is a form of ulcerative colitis. I had ulcers in my stomach, small intestines, and large intestines. I had become very weak by this point, had lost my job, and could barely take care of myself. I couldn't even buckle my girls into their car seats. Eventually, with medication and rest, I regained my strength and became better.
After 5 or 6 years, I decided I was better and stopped taking my medicine and seeing my doctor (I don't recommend doing this either). I did pretty good for awhile, but then the joint and muscle pain, and the fatigue started coming back. I also started having problems breathing at this point. I wasn't having any digestive issues so I didn't believe it was the Crohn's disease. I went to my primary care doctor and was told I had asthma, was depressed, and needed to lose weight. I never was satisfied with this diagnosis. Yes I was, and still am overweight, and yes I was depressed, but I knew that there was something else there. The symptoms weren't of depression, they were causing the depression. Eventually I got another diagnosis of Fibromyalgia. I kept having flair ups and they kept getting worse. I would start exercising and losing weight, then I would have a flair up where I couldn't breath, so I couldn't exercise, and I was in a lot of pain. I would gain the weight back, and more with it. My pulmonologist kept throwing asthma medicine at me, and I used them even though they didn't seem to work very well. I ended up unhappy with my primary care doctor and changed doctors. I had been seeing my new doctor for a few years when they changed their nurse practioner. After a few visits with her, she wanted me to see a pulmanologist, I had given up on my previous one. I was reluctant, but told her I would, just not the one I had seen before. I also told her I wanted to see a rheumatologist. I was sick and tired of being sick and tired. I got in to see the pulmanologist fairly quickly. At my appoint, he did some lung function tests. He came in to talk with me and said my lungs were healthy and I did not have asthma. He did say that I had something going on around my vocal cords, and wanted to do a bronchoscopy to see what it was. On October 19, 2016 I went in to have that done. A bronchoscopy is where the doctor gives you a little sedation medicine and, while I was still awake, put a little numbing medicine in my nose and throat and threaded a camera tube into my nose and down into my trachea to see what was causing the breathing issues. As the doctor was doing the procedure, the numbing medicine started making me feel as if I couldn't breath, and I tor talking about me having to have surgery. I had a panic attack right there in the middle of the procedure. By the time they were done, and had wheeled me into the recovery room, I was crying and very scared.
The pulmanologist sent me to see a thoracic surgeon, who sent me to see an ENT. This is where I was introduced to Dr. Black. I first saw Dr. Black in his Birmingham office on October 31, 2016. He used a scope to look into my trachea to see what was going on. He said that I had subglottic stenosis. Stenosis means narrowing and the subglottic area is the area of the trachea, the windpipe, that is just below the vocal cords. My trachea was narrowed by about 40%. The very next day, November 1, 2016, Dr. Black had me in surgery to do a balloon dilation. A balloon dilation is where a balloon type device is threaded into the narrow area and inflated to dilate, or widen, the area. He got my trachea opened up some, but wanted it open more, so three weeks later I had another dilation done. At the first dilation, Dr. Black ordered some blood work. He told me that he didn't know what was causing my issues, but he was going to find out. At the second dilation, I had a diagnosis. I have Wegener's Granulomatosis, or now it's called Granulomatosis Polyangitis. This is a rare autoimmune disease that causing granulomas in the blood vessels. These granulomas can cause big problems and can affect many areas of the body. Mine was mostly my sinuses, and of course my trachea.
I saw a rheumatologist, and got started on a treatment. I ended up having 2 more dialations on May 8, 2017 and October 31, 2017. Dr. Black wasn't happy with the way the treatment was going, so he sent me to Vanderbuilt University Hospital in Nashville, Tn for a second opinion. The rheumatologist there agreed with the diagnosis and recommended another treatment, Rituxin. I spoke with my rheumatlogist and she agreed, so she had me stop my current treatment and we got started with the insurance company to approve the Rituxin treatment. It took a month for approval, and with no treatment except for prednisone, it was a rough month. Rituxin is an IV treatment. It is 2 doses 2 weeks apart. I had my first doe the middle of January 2018 and the 2nd the first of February 2018. The plan was to give it 2 months to start working then do blood work and assess how I was feeling. Well before this happened, my rheumatologist decided she was leaving her practice to spend more time with her 1 year old daughter, and husband. I completely support her decision, but it was really a bad time for me. My husband and I had planned a weekend get away for our anniversary the first weekend in April 2018. We had a good time, but I couldn't breath very well so we ended up not doing much. I was scheduled for another dialation the Tuesday after we got back, April 10, 2018. It started out as usual, but I remember waking up and hearing them talking about aborting the procedure, and one doctor asking Dr. Black if he was going to admit me. While I was in recovery Dr. Black came in to talk with me. It turns out that they had to abort the procedure because my trachea was so narrowed, they couldn't even get a pediatric breathing tube in to intubate me. I got to go home that day, but was scheduled to see Dr. Black the next day to discuss our options. The next day, Ben and I met with Dr. Black. He told us that he thought it was time to do a tracheostomy, that we had put it off long enough. I was kind of shocked and numb at that point, but on the way home I broke down crying. It was a lot to take in. My tracheostomy surgery was scheduled for the next Tuesday April 17, 2018.
