Melody Papazis

I am not sure where to even begin so I shall start from the beginning. I was diagnosed with asthma at the age of 14. I am an identical twin and we were born prematurely so from the beginning I struggled with respiratory issues quite often. Coughing and chest tightness were a daily part of my life but because I had dealt with it for so many years I knew no differently and never complained. I started volunteering at the Children’s Hospital of Illinois when I was 14 and by that time I had developed a very deep, dry cough that caught the attention of one of the Pediatric pulmonologists. He suggested I have my pediatrician refer me to him and here is where the story takes off.

I went to Dr. Arnett, pediatric pulmonologist, who did pulmonary function testing and told me I indeed have asthma and have it pretty bad. I was started on several different inhalers which did help and only landed in the hospital 1 time for pneumonia during my high school years.

I started nursing school and was doing a home health rotation in a house infested with cockroaches. Apparently, these bad boys are not only disgusting but very bad for an asthmatic. I ended up in the ICU 2 times that semester before we realized what was causing these severe asthma attacks. While in nursing school my asthma went from moderate to severe and prednisone became my friend/enemy. From the age of 20 -30 years of age I was hospitalized about 15 times and every time I was in the ICU in severe respiratory failure. I still continued my job as a pediatric pulmonary nurse working with Dr. Arnett (crazy right, he was my doctor and then I became his nurse). I loved, loved, loved my job because I could truly empathize with my patients and their parents.

I was a runner and would tend to ignore my asthma symptoms. They say nurses make the worst patients and that is a very true statement. I would spend hours a day educating my patients about peak flows and asthma action plans but I myself never followed mine. I would come to work using every single accessory muscle my body had and would put on lipstick to cover my blue tinged lips. I would wear turtlenecks to cover up all the neck muscles I was using to breathe. Of course Dr. Arnett and my coworkers knew I was in distress but I was extremely stubborn and would not listen to them. People complain about the time you have to wait in the ER, well that was never an issue for me because I would only show up in the ER when I was practically near death. I always got star treatment in the ER….I don’t think this is necessarily a good thing…..and a first class ticket to the ICU. My typical hospital stays include intubation, bipap, continuous nebulizer treatments, prednisone, epi, magnesium, fluids and lectures about taking better control of my asthma.

8 months into my amazing marriage my asthma took another nose dive and my local pulmonologist referred me to Chicago to see about pursuing Bronchial Thermoplasty. The great Dr. White listened to my pathetic lungs (breath sounds almost completely silent with very little air movement or wheezing), did a pulmonary function test and told me we have 3 options. 1. We do the bronchial thermoplasty 2. You will most likely need a lung transplant in the next 3-4 years if we do not do the bronchial thermoplasty as my lungs were only functioning at 19% or 3. I will die from an asthma attack. BT (bronchial thermoplasty) is very difficult to get insurances to cover but by the amazing grace of God mine got covered right away and 2 months later I had my first procedure. The procedure is usually done outpatient but because of my severity mine was done inpatient and I spent a week in ICU after each procedure.

I spent the next 5 months in and out of the ICU as my lungs were pretty angry and irritated; however, after those 5 months my lungs opened up like they have never done before. My average peak flow prior to BT was 300 and after BT I am now blowing 560. I got to go back to work and things were looking good for our family. Then the big Washington Tornado came and turned our life upside down. The tornado destroyed hundreds of home’s and businesses but thankfully our house was fine; however, my lungs started clamping down hard. All the debris from the tornado irritated my lungs and I was back to asthma crisis. I had an appointment in Chicago to see the great Dr. White the following Monday so I just sucked it up, dealt with the asthma and decided to wait till I saw him to see if I needed to up my meds. By the time we got to Chicago my oxygen level was 72% and falling. See I told you I compensate well, I was still talking at this point…..not sure how but I was. As I was in the clinic I apparently lost consciousness and a code blue was called. My poor, precious husband had to endure watching all of this take place to me. I ended up on a ventilator but responded well and was only on the vent for a day. I was advised to not go back to Washington until all the debris settled so off to Missouri I went to stay at my twin sister’s house. Her husband is an ER physician and she is also a nurse so I was in good hands but completely homesick for my husband and kids. I ended up in the ICU 3 times in the 3 months I was there but after my last ICU stay we felt it was safe enough to go back to Washington.

And now comes the fun part of my asthma journey. For the next 18 months I did phenomenal and was not hospitalized 1 time. That had not happened to me since I was 19 years old. I have started back to work as a triage nurse and back to working out and living the abundant life God blessed me with. I come home from work and I am not completely exhausted. It’s amazing what good oxygenation will do for one’s morale and overall quality of life.

I was hospitalized this past June for 7 days but did not have to get intubated just bipap. I think my trigger was pushing myself too much when I was outside running and not paying attention to all the pollen my crazy lungs were being bombarded with. Even though I was really sick and in the ICU my lungs responded so much better than they previously had prior to BT. So, that brings us to today. I am currently on 3 inhalers but don’t have to take prednisone on a daily basis. We are currently in our beautiful fall season here in Washington and lungs are a little twitchy but responding well to albuterol.

I have been blessed with an amazing support system (family, physicians and friends) which I believe is vital to winning the battle of living with a chronic illness. My son is 12 years old and has been a diabetic for 4 years and his strength and endurance gives me extra courage to live my life to the fullest. My husband is quite possibly the world’s best husband. Marriage’s have a much higher divorce rate if one of the partners has a chronic illness. Our relationship has actually deepened and I can honestly say I would not be alive today if it wasn’t for him.

I also have an amazing support group on Facebook that have literally been a lifeline to me these past 3 years. Having a chronic illness can be very overwhelming and frightening at times but having a group of friends who can strengthen and encourage me in my journey is invaluable. I refuse to let asthma define me. It has shaped and molded me into a very courageous, kind and empathetic nurse, mom and wife. The trials I have endured have strengthened me and encouraged me to never give up, always look up and see the beauty in our moment by moment blessings. My favorite quote that I have hanging in my office is “ life is not measured by the breaths you take but by the moment’s that take your breath away.” I pray that whoever reads my story will be encouraged to never give up, take control of their asthma and not let asthma define them! God has a beautiful story unfolding before our eyes. Thank you for letting me share my story with all of you!!!

Brenda Young

My name is Brenda Young and I suffer from Severe Asthma / Asthmatic Granulomatosis.
Growing up I had asthma and allergies. When I hit puberty it got a lot worse. I missed so much
school because of it.
As I got older my hormones always caused my breathing to be worse and many hospitalizations.
After my second child it got a lot worse. My hospitalizations increased. I was on prednisone
continually. I had 2 little children at home and was in and out of the hospital frequently. My daughters
knew how to call 911 when needed. Thank goodness they only had to once as far as I can remember.
In 2011 I found the Severe Asthma Research Program(SARP) at the University of Pittsburgh Hospital. I
was accepted to participate and Also started following Dr. Sally Wenzel as a patient. Many tests were
done. New medications were tried to see if we could get me off the prednisone that I had been on for
over 20 years. I am still trying new medications and hoping and praying they work.
I have been in ICU on a vent and On BIPAP a lot. This disease has changed my quality of
life not for the better. When you can’t breath it is the worst feeling in the world.
It is a hard disease to live with but you have to keep going. MY husband and daughters have been
through so much watching me struggle to breath. They are more compassionate as people because
of seeing me and how they deal with people. It is awesome having such a great support system. It has
been a goal to make more doctors aware of this horrible disease .

Michelle Langille Wheeler’s Story

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.