Kristin Nowack, a severe asthma patient, contributed this blog post for Breathe Pennsylvania.
Have you been diagnosed with severe asthma? I have been living with severe asthma and know the trials and tribulations one may face. Severe asthma is not your typical asthma as many of you know. Severe asthma as defined by the European Respiratory Society (ERS)/American Thoracic Society (ATS) as “asthma which requires treatment with high dose inhaled corticosteroids (ICS) plus a second controller (and/or systemic CS) to prevent it from becoming ‘uncontrolled’ or which remains ‘uncontrolled’ despite this therapy.”
I was diagnosed with asthma when I was 3. I was in and out of the emergency department and in high school, I ended up in the ICU for two weeks. Fast forward a few years and I quickly became steroid-dependent and was diagnosed with steroid-resistant severe asthma. Those are words you never want to hear. To say I was scared was an understatement. I will be the first to tell you I was in denial. There was no way I was resistant to the mainstay of treatment for severe asthma; corticosteroids! I felt alone, scared and embarrassed. I was not going to let my severe asthma take control of my life. I completed my Doctorate of Nursing Practice on daily high dose IV steroids. Side effects of high dose steroids are truly awful. Weight gain, moon face, insomnia, diabetes and extreme emotions are just a few.
Living with severe asthma is a struggle. Although I don’t look sick, I have an invisible disease and struggle daily to breathe, often not even being able to walk across the room. I hide my disease very well and don’t want others to know I am having trouble breathing. I will always tell you, “I am fine,” even if I am not. I don’t want family and friends to worry. I don’t want them to cancel their plans because I can’t breathe “again.” Often times during a severe attack, I tell myself I am not sick enough to go to the emergency department because I am scared.
I have been on typical treatment for severe asthma; however, I did not respond to the medications and my symptoms kept getting worse. Prednisone is one of my main treatments, but not the typical lower dose that may be required to keep severe asthma symptoms under control. Every day I take 60mg of prednisone just to keep my symptoms somewhat manageable. By manageable I mean using my inhaler or nebulizer every two to three hours, while still wheezing and experiencing shortness of breath all day. I use a BiPAP (Bilevel Positive Airway Pressure) machine every night and require supplemental oxygen when I am extremely ill.
If you’re living with severe asthma, always remember:
- You are NEVER alone – 5 to 10% of asthmatics suffer from severe asthma.
- ALWAYS keep in close contact with your asthma doctor and follow your treatment plan.
- You are NOT a burden on others; accept or ask for their help.
- ALWAYS have your inhaler within reach. I always have my inhaler and carry prednisone with me.
- Reach out to others with severe asthma.
- New and effective treatments are available for some severe asthma patients.
- If your asthma is uncontrolled, see an asthma expert for up to date treatment.
- When in doubt about your breathing; don’t hesitate! Seek emergency treatment immediately.