Jenny was just 18 months old when she was first diagnosed with severe asthma. “I jokingly tell people I am allergic to my brother because I received my official diagnosis the day he came home from the hospital,” she laughed. So, at just a year and a half, Jenny began her harrowing struggle to control her symptoms, which her mother and grandfather also had, but that doctors told her family were much more severe for Jenny. “Other people in my family had asthma, but mine was so severe that when I was five, I ended up coding and the doctors told my parents that they weren’t sure if I would survive,” Jenny explained.
Though she did survive, such a severe diagnosis meant that Jenny never experienced a normal childhood. She was unable to join a sports team, or even go outside and play like other kids because her parents were afraid something would trigger an asthmatic episode. “We used to joke, don’t make Jenny laugh or cry or she is going to have an asthma attack and we don’t want to have to go to the emergency room,” she said. “Sometimes I felt like the girl in the bubble.”
In 10th grade, Jenny’s symptoms flared when she tried to attend her high school’s holiday parade. It was cotton ginning season in her hometown and this trigger caused her to wheeze and become so short of breath, she knew she needed to go to the emergency room. Her healthcare provider told her she had a deep-seated infection, and so, for her own protection, she would spend the rest of her high school years homebound. “My asthma was so bad I couldn’t walk across the room, and I was constantly in and out of the hospital,” Jenny recalled.
Up to this point, Jenny’s healthcare provider had prescribed high doses of steroids, given intravenously when she was in the hospital, but also taken orally and inhaled at home. She was using a quick relief (albuterol) inhaler or nebulizer every four hours on good days, or every two hours if symptoms were more severe. In addition, to strengthen her immune system, she was receiving four allergy shots weekly. During this time, new asthma medications were coming on the market so Jenny would also try a pill, montelukast (Singular®), and combination inhaler (fluticasone propionate & salmeterol Advair®). But it was the broad-spectrum antibiotic that they gave Jenny while she was in the hospital that finally offered some relief.
“When I was 18, I remember driving to my pulmonologist, which was three hours away in Oklahoma City, and trying to read through the list of medications and side effects. Some could affect my liver, my fertility, etc. I looked at my mom and said, this is not fair. My friend’s biggest decisions were trying to find shoes to match their prom dress and I was making major decisions about my future and my life,” she said. “I was just so exhausted from fighting.”
But, with the help of her family, Jenny never gave up. Major advancements in asthma research have led to new and more effective medications and procedures that are making a difference. “I’ve had some permanent airway remodeling and some of my breathing function tests are more similar to COPD, so we tried COPD medications,” she said. Some medications have been more successful than others, but Jenny stays on top of every new advancement and keeps an open dialogue with her healthcare providers so that they can try new things.
About five years ago, Jenny changed her lifestyle in three significant ways to complement her treatments. First she moved from Oklahoma to Arizona where her triggers were less and the climate was more arid. Second, she noticed red meat as a possible trigger and became a vegetarian. Finally, she worked to stay healthy through exercising to reduce her stress levels. "It was the first time I didn't have to be hospitalized and on oral steroids multiple times a year," she said happily.
Finding the Blessings in Living with Asthma
As she continues to find new ways to manage her own symptoms, Jenny has learned to find the silver linings in life. While working as a pastor in the hospitals in Arizona, Jenny found she could closely relate to the people she visited. She even became the go-to person to help children newly diagnosed with asthma learn how to use their inhaler or nebulizer.
Jenny’s initial introduction to the Lung Association was at Camp Breathe Easy, a summer camp specifically designed for children with lung disease. In college, she began participating in the Lung Association’s asthma walk. But it was when she moved to Arizona and began her ministry that she really ramped up her involvement. “I began advocating on behalf of not just me as a person living with asthma, but also my family members with COPD and asthma, and my grandpa who died of lung cancer, and the many people in my congregation who are living with lung disease,” she said.
She represented the Lung Association in an interview with PBS about Arizona Air quality. Then she took her talk to legislators via Zoom during COVID-19, and in-person once things reopened. As the Arizona LUNG FORCE representative, she has done interviews on many news channels and written letters and petitions about the importance of improving air quality for those with lung disease. This year, she traveled to D.C. for LUNG FORCE Advocacy Day to continue the conversation. “People don’t always understand the toll that these diseases take on how we live our lives. There are certain things that we can all be doing better to make life easier for everyone,” she said.
“The right to breathe is such a sacred thing. Many people never have to think about it, but those who live with lung disease think about it every day.” Learn more about asthma, LUNG FORCE and Clean air at Lung.org/asthma.
Blog last updated: June 7, 2024
