My name is Michelle Langille Wheeler and I am Secretary of the Severe Asthma Foundation. I am the mother of two amazing girls and a stay at home mom due to disability. I am disabled by my severe asthma, unable to work or finish my graduate degree due to the unpredictability of this illness. I have been hospitalized 43 times since December, 2009 when I contracted the H1N1 virus. I am prednisone dependent. That may not mean much to some, but taking prednisone every day takes a serious toll on so many different parts of your body and body systems.
I have been asthmatic since I was 22 years old when I got a respiratory virus and had a hard time breathing. The emergency room doctor asked me “How long have you had asthma?”. I was shocked. My response was “I don’t” but unfortunately, that doctor was correct. I had developed Adult Onset Asthma. For many years, I had “regular” asthma, carried a rescue inhaler and used a low dose maintenance steroid inhaler. I had difficulty when I got sick, went into humidity, was exposed to chemicals or went into the cold air. But all these were controlled with an inhaler or the occasional visit to the emergency room.
In January, 2005, I developed pneumonia and my asthma changed. I became what can be referred to as a Moderate Asthmatic. I needed higher doses of maintenance medications and was sick several times a year. Most of these illnesses required high doses of prednisone to get my asthma under control.
After I developed Severe Asthma in 2009, my life changed completely. I developed Acute Stress Disorder and feel like the world is a war zone for me. Just three weeks ago, I walked by a pool supply store whose door was open and by the time the ambulance arrived, I was in respiratory failure, taking one breath every 60 seconds. My best friend was told by 911 to start CPR. This simple walk down a strip mall put me into ICU. Another incident was when I was at the movies and after the film I was in the bathroom when two teenage girls sprayed perfume. I used my portable nebulizer, which I carry with me everywhere I go, but I was in the Emergency Room within two hours and hospitalized for days.
I have been in and out of the hospital 43 times, many times in ICU. I have been in respiratory failure, been bagged in the ambulance and had one failed intubation. The intubation failed due to structural issues with my larynx. I was on high doses of prednisone every day for years. I developed Cushings disease, high heart rate, high blood pressure, Type 2 Diabetes, cataracts, adrenal failure, I lost most of my hair and have to use a cane and/or wheelchair depending on how bad my asthma is flaring. I developed central and obstructive sleep apnea and require oxygen when I sleep in addition to a bipap machine. In 2011, I tried the new treatment Bronchial Thermoplasty on my lungs, but it was unsuccessful. In November of 2013, I entered rehabilitation for three weeks to have doctor monitoring tapering of my steroid use. I have not been able to completely taper off steroids and will probably need them for my whole life, as my adrenal gland has failed. The doctors have discovered that I have IGG immune deficiency. This requires monthly infusions. My veins are so abused they can no longer get IV’s for my infusions without trying several times. I need two but usually get poked 4-5 times each month. Last week, I had a central IV port installed to help my veins recuperate. There are many days all I can do is get up and rest. Some days it takes all my energy to do nothing more than walk around my house. I take approximately 20 medications a day, many of which have terrible side effects.
I live with this invisible disease but hope that sharing my story will help increase research, education and one day find a cure for this horrible disease.