Living With Asthma and Advocating for Others

Before my journey with asthma began, I thought I was the lucky one in my family. My grandfather and father both had asthma, but I didn’t have it as a child. I didn’t develop asthma until I was an adult.

I was diagnosed in 2014, and at first, my asthma was mild and manageable. But by 2015, my asthma became severe. It had worsened to the point that I was being hospitalized regularly. It really spiraled out of control within a two-year span, which was very overwhelming. I work as a respiratory therapist, so I knew what was happening to me, but I couldn’t stop it.

After my first hospitalization, I hoped that regular treatment options would work. I was on standard breathing medications, including bronchodilators like albuterol and Advair. But things got progressively worse.

Previously, I was taking medication twice a day. But then it became every four hours, and some days, I was taking it every two hours. I was living off my nebulizer and frequently needed to go to the hospital. The asthma was taking over my life, and interfering with my personal and professional life.

Barriers to Treatment

By 2016, my initial pulmonologist told me that I needed to have a bronchial thermoplasty. But he hadn’t ordered any pulmonary function tests to see if that was the correct treatment. I didn’t have a lot of trust in him. I needed someone that was going to at least try other avenues before going straight to surgery.

While I was receiving care in the hospital, I met a new pulmonologist, Dr. Timothy Connolly, and I’ve been with him ever since. He ran virtually every test in the book. After the results, he came to the same conclusion—that a bronchial thermoplasty was the best option.

It would be a series of three surgeries. I had the first one in October 2017, which went well. I was supposed to have the next one the following January. It was scheduled, but the day before the surgery, I was told that my insurance denied it.

It turns out my insurance had changed with the new year, so even though the surgery was previously approved, they now had the right to deny it. I started the appeal process, but in the meantime, I was being admitted to the hospital almost every other week, and I was still trying to keep working.

Eventually, I went on Facebook and found a bronchial thermoplasty Facebook page. The Allergy & Asthma Network (AAN) was on, and I sent out a live message, telling the group about my situation.

I got a response from someone saying they would contact me. That person turned out to be the CEO of Allergy & Asthma Network, Tonya Winders.

Tonya told me about their advocacy work and how they might help me fund this surgery. She showed me information about my rights and the bills they had helped pass to advocate for patients’ voices. There was legislation that might help me and others in the same situation.

Finally, my surgery got approved in October 2018, a full year after my first surgery, which wasn’t ideal. By then, I was so weak from not going through the surgery earlier. I wasn’t healthy or strong. My doctor was terrified too, worried about how it would go and if I would even be able to get the third surgery, which would need to be the following January. He decided to expedite it, so I got the second surgery in October and the third in November. It left me pretty debilitated.

But overall, the surgery worked really well. I’ve only had one hospitalization since then.

Ultimately, I feel blessed every day that I got those surgeries, because my life changed tremendously. From having to take medication constantly to now, where I only have to take one medication twice a day and another one once a day. I’m not glued to a drug regimen like I was before. It makes life more wonderful.

Complications From Asthma

During the pandemic, I got COVID-19, which was really scary. Everybody thought it was going to take me down, because I already had a weakened immune system. But I ended up getting the antibodies and recovering after a few weeks.

I also developed Cushing’s syndrome, because of all the steroids I used over the years. Because of this overuse and how it affected the cortisol in my body, I suffer from diabetes, I have osteoporosis, and I’ve also gone into congestive heart failure. I’ve even had to have the adrenal gland removed from my right kidney. Many people don’t really realize all the complications that can occur as a result of asthma.

Getting a second opinion was probably one of the best things I did for my care plan, because I was not okay with someone recommending having surgery right away without any prior tests. So you have to stand up for yourself.

Advocacy Work

I’ve gotten to participate in a lot of advocacy work from my involvement with AAN. I actually spoke about my treatment therapy on Capitol Hill at one of the congressional buildings. It was probably the most sensational moment of my life. At the time, I had a broken foot from my osteoporosis, so I was pushing myself around on a scooter!

I told them my story about what had happened to me, and that even though I have all these issues, I feel grateful to be alive. I know I will never be exactly where I was before the asthma, but I’ve made so much progress. I’m at about 75% now, but it’s a lot better than the 10% I felt before the surgery.

AAN also asked me to start participating in patient advisory boards and focus groups. I got to share my story and give advice to others going through similar experiences. Even though I’m a respiratory therapist, it’s completely different being a patient than just being a professional. You have a new compassion and understanding for your patients.

I also work on webinars and community surveys, reaching out to the African American community about asthma and COVID-19. It’s been pretty awesome to be a part of something like this. I’m able to talk to others that are going through the same thing and see that I’m not alone. We’re all in this together.

What I’ve Learned From Living With Asthma

Throughout my years with asthma, I’ve seen how the drug regimen can really slow you down. You can’t fully participate in life when you have to do constant breathing treatment.

I found that my coworkers started to look at me differently. They thought I was weak, so I felt like I couldn’t ask for help. They’re not as kind to you and treat you differently.

My asthma can also be triggered by stress, so the employment situation was stressful and made it worse. But you have to keep going because there’s always a patient that needs you. I found I wasn’t able to maintain that type of energy for a fast-paced ICU, so I work in a rehab hospital now.

My asthma has made me more resilient. There is a stigma that goes with it, because some people think that asthma isn’t serious. That even though you’re wheezing one minute, you look fine the next. People undermine it because people seem fine after using an inhaler.

Before the bronchial thermoplasty, I thought about all the things I took for granted and was afraid I wouldn’t have again. Things like enjoying time outside, hiking, or going on bike rides with my kids. All the things I thought I might never have again. It was so devastating. Being able to get that back feels so good. I feel like I’m living life fully again.