My Severe Asthma Made Me Afraid to Live

As told to Erica Rimlinger

I was 19 years old when my first asthma symptoms appeared, but I didn’t know that’s what they were. I thought I just couldn’t get rid of a bad cold. I had a cough that kept me from laughing during the day and sleeping during the night. I felt tightness in my chest and shortness of breath, and I was wheezing.

I was a healthy kid growing up, but my dad and my brother both had asthma. As children, we didn’t find it scary because we didn’t know how dangerous asthma was. As an adult, I knew what was going on, and I panicked because I couldn’t breathe. I would end up in the ER a few times per year and was admitted to the hospital for symptoms at least once a year. Each time, I was prescribed a steroid called prednisone. I took it and thought it was great. I could breathe. I’d take it for a while, then stop when I was supposed to.

The problem was my symptoms never stayed away for long. I found an allergist, only to have them give me prednisone again. I tried half a dozen inhalers, at least, and any new treatment I was offered. I was always willing to try anything that would help. Sometimes the medications would hold back my symptoms for a short time, but I always ended up back on prednisone, which is supposed to be a short-term medication. I didn’t know it at the time, but I’d be on prednisone nearly continuously for almost 20 years.

Prednisone has a lot of side effects, and I experienced a bunch of them. I was always hungry, I gained weight, I had mood swings, I’d get jittery and I had so many sleepless nights. And then there was the fear from knowing my meds weren’t really controlling my condition.

I knew my asthma could return at any time, and it did. I’m a person who loves to laugh, and I was afraid to laugh too hard because it could result in coughing and bring on an asthma attack. A proud Puerto Rican, I love to salsa dance, and I couldn’t. It was just too scary with asthma.

I even hated walking. I manage a residency program, and part of my job is giving hospital tours to the new doctors. I’m a people person, but I dreaded walking and talking. I bonded with one of the doctors at work over our shared asthma diagnoses. She told me she could always tell when my asthma was bad, just from my voice and my energy level.

Dennisse and her husband, Simon

During one of my hospital admissions, I met an asthma specialist who was well respected and happened to be working in the hospital. I asked him if I could be his patient. I had the best relationship with him I’ve had with any doctor. He really listened to me.

We tried treatment after new treatment. I was patient: I’d give a medication three to six months to work. My asthma specialist, whom I saw far more than my general practitioner, was the type of doctor who trusted my lived experience and listened when I told him a medication wasn’t working. He didn’t doubt me or try to convince me it was.

Some medications worked for a little while, but they’d become less effective after a few months, and I’d end up back on a higher dose of prednisone, frustrated that nothing worked for me. One time, after an especially disappointing medication tryout, I even asked if I could get a lung transplant.

Then, about seven years ago, I saw one of those “ask your doctor” commercials about a new medicine given by injection. The next week I was in my specialty doctor’s office, wheezing and coughing as usual, and asked if I could try it. I needed bloodwork to see if I could take it, and once I cleared that hurdle, I cleared the insurance hurdle.

After the first couple of shots, I knew it was working. I knew because I could talk without coughing and walk without wheezing, and I had been able to slowly wean off the prednisone. After about five months, I felt better than I had in years. I didn’t want to get my hopes up too high. I’d been on prednisone so long at this point that the mere thought of staying off of it was a dream.

After seven years, the new medicine is still keeping me symptom-free and full of life. I haven’t needed prednisone since.

I’m older now, but I feel like my younger self. I’m salsa dancing again, and I’m not afraid to go out, even without my inhaler. I’m able to enjoy the walking and talking I do at work. I have a big, fun family and friends I can now laugh with — wholeheartedly, not holding back in fear of an asthma attack.

Asthma is scary — I have uncles and aunts who’ve died from asthma attacks in recent years — but I know hope can sometimes feel scary too. I want other women to know my story so they can lose their fear of hoping for an asthma treatment that works for them. I’m living proof that even with severe asthma, people can have a life free from symptoms and fear, and dance like they haven’t in years.

This educational resource was created with support from Sanofi and Regeneron.

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