A good treatment for bad asthma

While looking for something else, we stumbled upon an action-packed blog post by a patient with virulent, relentless asthma who was rescued by her UChicago physicians using a treatment with a scary name, but a comforting outcome. Her story also involves a tornado. Below, in her own words (slightly trimmed for space), Melody Papazis, RN, tells her harrowing tale.

For most of my life, it seemed like constant coughing and chest tightness would be a daily occurrence. When I was 14, my deep, dry cough caught the attention of a pediatric pulmonologist. I had asthma. I had it bad. He prescribed inhalers. This helped. During high school, I only landed in the hospital once.

In nursing school, I went on a home-health visit. The house was infested with cockroaches. I learned that day that roaches are especially problematic for people with asthma. I wound up in an intensive care unit twice that semester.

In my early 20s, I was otherwise healthy, a runner. This enabled me to ignore my asthma. Prednisone, a steroid that can reduce inflammation, became my best friend. Its side effects were my worst enemy.

Then my asthma progressed from moderate to severe. I was hospitalized about 15 times. Each time, I would wake up in the ICU in respiratory failure. But I loved my job as a pediatric pulmonary nurse. I worked with the doctor who first diagnosed my asthma. I stuck with it. I could empathize with my patients and their parents.

Nurses, the saying goes, make the worst patients. I was an excellent bad example. I spent hours each day teaching patients about peak flows and asthma action plans, but I never paid much attention to my own plan. I wheezed. I struggled to breathe.

My coworkers offered advice. I neglected to listen. I had multiple trips to the ER, and a frequent-flier ticket to the ICU. My hospital stays involve tubes down my throat, continuous nebulizer treatments, steroids, magnesium, fluids, all followed by lectures on how to take control of my asthma.

Eight months after I got married, my asthma, already bad, took a nose dive. This time, my pulmonologist sent me to the University of Chicago, one of the leading centers in the country, for a treatment called bronchial thermoplasty (BT).

Here's how doctors think BT works. Smooth-muscle tissue lines the human airway. It serves no known purpose, but it causes many asthma symptoms. This tissue can be hypersensitive. When annoyed, it contracts, narrowing the breathing passages, making it hard to breathe.

In BT, doctors slip a thin flexible tube through the nose or mouth, down the throat and into the major airways of the lungs. Then they pass a smaller tube through the first tube. The tip of this inner tube has a tiny expandable heat source. It is positioned to touch smooth muscle that lines the airway. Then the heat source is turned on, to about 150 degrees Fahrenheit – a little cooler than a hot cup of coffee. That lasts for 10 seconds.

This heat gets rid of about half of the smooth muscle cells that line that segment of the airway. The catheter is repositioned and re-heated about 30 times, until all the accessible airways from one lobe of the lung have been treated. This takes about 45 minutes. It takes three treatments to reach the entire lung.

At the University of Chicago Medicine, asthma expert Dr. Stephen White listened to my lungs. They were functioning at less than 20 percent. After a pulmonary function test we met and he carefully explained my options.

• First choice: Try bronchial thermoplasty.
• Second choice: Prepare for a lung transplant.
• Third choice: Die from asthma.

We ruled out choices two and three.

The U of C helped pioneer this treatment. They were part of the initial trials, beginning in 2006. BT was approved by the FDA in 2010. Nevertheless, it can be difficult to get insurance companies to cover BT. With my history, however, I got approved right away. Dr. White put me in touch with his colleague, another asthma specialist, Kyle Hogarth, the University's BT specialist. Two months later I had my first procedure.

Bronchial thermoplasty, Hogarth explained, consists of three separate bronchoscopy procedures done under anesthesia. Each procedure takes roughly 40 minutes and involves a separate region of the lung.

Although it is usually performed on an outpatient setting, mine was done in the hospital. That was wise. My asthma, Dr. Hogarth told me, was more severe than had been previously studied.

I spent a week in the ICU after each of my three procedures. After they were completed, I had multiple visits to the ICU. My lungs were angry.

After five months, however, my lungs recovered. They opened up like never before. I could breathe freely. My peak flow prior to the treatments was 300. After BT, it zoomed up to 560. I went back to work. For the first time since I was 14, life was looking good for our family.

Then, at 11 am on Nov.13, 2013, a devastating tornado passed through my town, Washington, IL. It destroyed hundreds of homes and businesses. We were lucky. Our house was fine.

But my lungs were not fine. The airborne debris from the tornado annoyed everyone, but it was much worse for me. Despite BT, my lungs clamped down hard. I was in asthma crisis. I needed help, quick. By the time we got to Chicago, my oxygen level was down to 72 percent and falling. I lost consciousness in the clinic. I wound up on a ventilator for a day.

The air quality in my town took months to return to normal. I went to stay at my sister's house in Missouri. I was in good hands there. Melissa is a nurse and her husband is an ER doctor. But I was homesick for my husband and my son. After three months, we felt it was safe to go back home.

The extended family. Melody, with glasses, is in the group of three on the left, with her husband, Chris, and their son, Lance.

Now comes the fun part. I did phenomenally well. I was never hospitalized. That had not happened to me since I was 19. I went back to work, started exercising again, and lived the life God gave me. When I come home from work, I am not exhausted. It's amazing how breathing freely has raised my spirits and quality of life.

I still use three inhalers, but I no longer take daily prednisone. I have a great support system, crucial for anyone living with a chronic illness. My 12-year-old son Lance has diabetes. His strength and endurance give me extra courage. My husband, Chris, is possibly the world's best. Without his help and encouragement, I would not be alive today.

In the end, with a lot of help, I chose not to let asthma define me. The trials I have endured strengthened me. I keep a plaque, a daily reminder, on my office wall. "Life is not measured by the breaths you take," it says, "but by the moments that take your breath away."