Updated: Jan 25
My Journey to TBM Diagnosis, Surgery, and Quality of Life
I was living a full active life. Although diagnosed with asthma as a young adult, it never stopped me. One day, while working in the yard, I had trouble breathing. It felt like an asthma flare, with shortness of breath and a tight chest, but I had a deep chest cough and a wheeze. Though I did have asthma, this was different. It turned out to be Tracheobronchomalacia (TBM) — a common yet under or misdiagnosed disease that causes the walls of the airways to narrow and collapse.
Journey of Frustration I have been a physical therapist for nearly 40 years and was always very active. I was very adventurous as well. I loved to climb and hike. I took trapeze lessons. I tap danced. I loved to sing. I even picked up square dancing—in fact my husband and I did so well we were asked to be on an exhibition team and even went to nationals! But that was all before 2014— when all of that changed.
I was married to my second husband, enjoying my new blended family of five children for less than a year when I first got sick. I remember working out in the yard all day, nothing I haven’t done before. But I ended up with this terrible coughing and wheezing…. I always had asthma and thought it was just an allergy. But this felt odd; I had never had this feeling before. I couldn’t lay down. If I did, I coughed violently. This was when the parade of hospital and doctor visits began. The first thing the doctors tried was treating me for asthma. Nebulizing with albuterol helped very little, adding ipratropium, a medication generally used for COPD helped a little more, but nothing stopped the deep, violent cough, the shortness of breath, and the wheezing.
They kept me in the hospital for a week and pumped me so full of steroids I gained 12 pounds. I couldn’t walk 25 feet before the wheezing started. I was hoarse or voiceless most of the time. Because the pulmonologist couldn’t see anything unusual in the test results, he discharged me and said I should go back to work. But I was not functional. I went from being highly active and independent to completely dependent—I needed help with everything. But at this point, the doctors were thinking I was fabricating the entire situation.
Over nine weeks, I saw many more doctors and had many more tests. Then, a colleague introduced me to another pulmonologist who wanted to treat me for gastroesophageal reflux disease (GERD) assuming I had been in a continual asthma flare. He explained that reflux is a trigger for asthma which is a trigger for GERD. In order to look into this further, I would need a referral from my primary to go to a GI. I did get the GI consult approved and was put on Dexilant. My symptoms settled down remarkably and I resumed a very active schedule—working 4 days a week, and square dancing 4 nights a week. However, this was a short-term win from 2015-2017, and GERD was not ultimately the cause of my suffering.
Finally, A Diagnosis-- In 2017, I started to get sick more often. Respiratory struggles and infections returned. The slightest cold would turn into a full upper respiratory tract infection that would have me on steroids for weeks…no one knew why. I went from doctor to doctor, looking for answers and a diagnosis. This went on for nine months until an Ear, Nose, and Throat specialist (ENT) I was seeing had a hypothesis. “Your vocal cords are pristine…I think it is Tracheobronchomalacia.” “What in the world is Tracheobronchomalacia???”
My ENT ordered a dynamic CT scan—taking pictures during inhalation and exhalation and comparing the collapse. I was collapsing 92-100% the full length of my airways. I was officially diagnosed March 2018 and had an eight-hour thoracotomy by May of 2018—mesh was sewn to the back of my trachea and both mainstream bronchi. It is a complex surgery and very few surgeons back then could perform it—and that is still true today. After several months I was able to resume work as a neurological PT, 13,000 steps a day, transfers and balance training, all very physical. However, in 2019, I started getting worse again.
Breathing More Freely, But Not Easily
The shortness of breath returned, I had a high-pitched wheeze, and a horrendous, violent cough when I tried to lay down. No one could figure out what was happening. They said it was behavioral—all in my head. Then I met Dr. Richard Lazzaro through a friend on the CureTBM Facebook Group. He was the head of Thoracic Surgery at Lenox Hill at the time, and one of the country’s leading experts on TBM.
Dr. Lazzaro did a bronchoscopy and found that my original tracheobronchoplasty was still holding my main airways open. He used a DaVinci robot to clean up my scar tissue and performed a lung biopsy. He collaborated with a pulmonologist at Lenox Hill, Dr. Suhail Raoof, who was the first person to explain to me why I had the symptoms I had. They found I was trapping 600cc of air, 3x the norm, leaving less air to participate in ventilation. He explained to me about air stacking: “Each breath becomes smaller and smaller until your lungs slam shut.”
Dr. Lazzaro and Dr. Raoof put me on a portable ventilator. It allowed me to exert myself without trapping so much air. I could take care of myself, my family, and my home; I could go to doctors’ appointments and out for lunch with a friend without wheezing. Dr. Lazzaro watched as I skipped down the hospital hallway with my new ventilator strapped to my waist.
It was a new lease on life for another two years. And while I feel guilty complaining, it still wasn’t the life I yearned for…I had to drag the compressor or an oxygen tank around with me. It certainly wasn’t easy.
Quality of Life Restored
Dr. Lazzaro listened to me: my challenges, my goals, my dreams. He believed me and he believed in me. Even with the ventilator to use, he kept monitoring me and searching for the source of the wheezing and coughing that occurred especially when I laid down--always in search for a way to further improve my quality of life.
In the fall of 2021, a dynamic bronchoscopy showed a “choke point” in the bronchus intermedius, full collapse on exhale, essentially not allowing air to exit my right lower lobe. Dr. Lazzaro referred me to Dr. Septimiu Murgu, an interventional pulmonologist at UChicago Medicine. Dr. Murgu performed a dynamic bronchoscopy and noticed a "choke point" in the bronchus intermedius, full collapse on exhale, essentially not allowing air to exit my right lower lobe. Although he first advised weight loss, after I lost more than 20 pounds and had zero improvement in symptoms, Dr. Murgu recommended that Dr. Lazzaro surgically correct it.
I sat in front of Dr. Lazzaro, in his new position as Chief of Thoracic Surgery for the Southern Region of RWJBarnabus in New Jersey. Assertively I said, “I want you to fix me.” Confidently he said, “I will.”
This surgery would be performed robotically, so much less invasive than the open surgery I had in 2018, with less complications and less recovery time. I trusted him implicitly: no fear, no concern, no dread. After 3 years of challenging symptoms and 2 years being tied to a ventilator, it appeared we found the cause and Dr. Lazzaro was going to surgically repair the collapse.
The results from the robotic bronchoplasty have been nothing short of miraculous. After the procedure, I was able to lay down for the first time in years without coughing or wheezing. I went to the ocean and screamed at the top of my lungs. I played with my feet in the sand and the surf with no ventilator or compressor to hold me back. For the first time in 8 years, I could sing in my own range. I started voice lessons to retrain the muscles I had not been able to use due to decreased air flow. I used to lead worship at church before 2014. TBM stole my voice. Now I can sing again.
I feel the best I have in years. Getting answers, receiving a correct diagnosis, having minimally-invasive surgery to correct my airway collapse, have been truly life-changing and life-saving. I have my life back thanks to Dr. Lazzaro and this surgical repair. I now plan on a different type of journey creating many more chapters in my book of life.
Above: Cathy square dancing post-surgery.