Hello, my name is April Hutzler. I have idiopathic tracheal stenosis, and this is my story. In 2005 I began feeling a little short of breath upon any kind of exertion. Whether it was exercise or simply doing house chores I was continuously feeling out of breath. I thought this was odd considering I was regularly active my whole life. I played high school basketball and ran track. I played basketball in college with lots of conditioning. After college I did kickboxing and HITT workouts with a trainer. So, to get out of breath by simply dusting the house was concerning me. I decided to go to my primary doctor to see if he had any insight into what it might be. My first diagnosis was depression. He blamed me for being out of breath on depression because my mother had recently passed away. I tried to tell him I was sad but by no means was I depressed. I loved my life and was happy. He prescribed me anti-depressants anyway which I refused to even get filled at the pharmacy. As time went on me getting out of breath started to impede my daily life. I started to have a tough time holding a conversation without gasping for air. I could not take a shower and get ready without having to take several breaks to catch my breath. Exercising was out of the question. I could not even walk from my car to the front door of my work without sounding like I had just run a marathon. For three years I went to two primary care doctors, asthma, and allergy doctor, two pulmonary specialists, ENT specialist, cardiologist, and a gastroenterologist. I missed being diagnosed with depression, asthma, anxiety, GERD, pulmonary high pretension, and cardiology ran every test you can to check for heart disease. I took all kinds of medication until they proved they were not working or improving my health or breathing. Finally, two doctors were honest with me and told me they did not have any idea what was going on with my shortness of breath. My asthma and allergy doctor and my second primary care physician both said this to me. At this point of my health journey, I knew it was up to me to find out why I could not breathe. I sat my husband down one night and told him if I did not get a diagnosis soon, I was going to die. This was one of the most difficult conversations I have ever had in my life, but I knew my life was in jeopardy. I went to another ENT Dr. Spears who is now retired. He looked down at my airway but did not go down far enough to see the stenosis. He felt I had a pulmonary issue and referred me to another pulmonologist. I went to see this new pulmonologist and she ran all kinds of tests. She called Dr. Spears and they both conferred there was something in my neck area that was causing some kind of obstruction in my airway. Dr. Spears decided to do a CT scan that would show slices of my neck area. On the CT scan you could see plain as day my airway and there it was finally after three years my airway, and it was as small as a coffee straw. Dr. Spears explained that this condition was out of his area of expertise and referred me to Dr. Simpson who was an airway expert in San Antonio. At that time in 2008 there were not a lot of airway experts so to have one in the city I lived in I was extremely grateful. I called to make an appointment with Dr. Simpson, but he was out of the county at the time. I tried to wait for the appointment, but I could not. I felt like I was going to die within a few days if I did not get medical help. I decided to go to the ER where Dr. Simpson did his surgeries. When I arrived at the hospital, they immediately took me back and called Dr. Simpson’s team down to see me. When they looked at my CT scan, they wanted to do a tracheotomy right there in the ER. I refused because I was extremely frightened. I did not know what a tracheostomy was or how to live with a trach and I had so many questions. After much discussion with the doctors, we all agreed to do an awake tracheotomy the next morning. I spent the night in the ICU and the next morning I laid on a surgical table while the doctors made an incision in my neck. As soon as I took my first breath, they put me to sleep. I woke up breathing normally but with a tube in my neck. I had the trach for 30 days. Dr. Simpson performed a laser and dilation combo to open the airway. A few days later he took the trach out and sealed up the hole in my neck. I was happy I finally had a diagnosis and a doctor who could help me manage my condition. Unfortunately, this is not the end of my story. I have been dealing with this continuously for the last 15 years. I have had over 30 surgeries to keep my airway open. I did get a reprieve from surgeries for almost two and a half years. I call it remission. My condition was in remission for two and a half years but in 2017 at the age of 44 I needed open heart surgery. It took the anesthesiologist an hour to intubate me. He came out and told my husband that it was exceedingly difficult to intubate me, and he confessed he probably did some tearing of the trachea while intubating. He was right but I do not blame him at all. I was narrow and it had been a long time since I had my airway dilated. After my open-heart surgery, the stenosis returned. I had surgeries about every three to four months then it progressed to every six, eight or nine weeks. Dr. Simpson moved to Alabama, and I am currently seeing Dr. Whited in Austin, TX. During the interim of seeing different doctors after Dr. Simpson left, I was only being dilatated with a 12mm balloon during surgeries. Now that I am seeing Dr Whited he is using a 16mm to get me as open as possible as well as applying Mitomycin C along with Kenalog steroid injections and the laser during my surgeries. This has been an incredibly challenging journey that I continue to deal with and deal with the health repercussions of not being able to always breathe well. I try to live my life as fully as possible with my limitations, but it is difficult. Being social situations is the worst. Always having to explain to someone why I am breathing so hard or must gasp for breath while talking to them can be exasperating. Especially since most people have no idea that your trachea, esophagus, and throat are all three completely different parts of the human anatomy. I have had Idiopathic Tracheal Stenosis for the last 18 years. I am not a candidate for a resection surgery because my stenosis is in 3 different areas of the trachea, and it would require too much of the trachea to be removed. Dr. Whited is going to try in-office steroid injections to see if this cut down on the frequency of my surgeries. After 18 years of dealing with this condition I am willing to try anything. I often wonder if I will be 80yrs old still having surgeries to open my airway? Will someone find a cure? My hope is that someday a doctor or a collective of doctors will figure this condition out.
