Amber

My name is Amber, I have been a severe  I’m an asthmatic. I got diagnosed at 12 years old in 1994.I’m currently 34.  I have been a severe asthmatic since 2008. What changed? I don’t know I saw the wind changed directions or something. My usual spring attack hit and it still hasn’t stopped, it’s been 8 and a half years so far. Let me tell you a little about me.
Before the asthma ruled my life I was a firefighter paramedic. I saved lives and helped folks like me now. I rode horses, I hunted, fished, camped, 4 wheeled, trained dogs. I helped my mom and granny out. My mom was battling breast cancer. I was a normal woman I was a mom and a wife. I still am a mom and a wife to a different husband. I lost my career and my independence. I’m now tethered to an oxygen machine, like many of my patients were. I’m a professional patient now, I spend most of my time shuffling around to doctors appointments and trying to fight for social security because I can’t work anymore. I tease that I own half of wal mart pharmacy and I’m allergic to the other half of it, and all of the folks in the pharmacy knows me by name. Now let me tell you about living with this horrible disease that has stripped my freedom, and many more peoples freedom.
First off, what is asthma? We know the textbook definition, the airways inside the lungs constrict, or get smaller, causing trouble breathing. Sounds miserable doesn’t it? My definition is this. Take a coffee stirrer straw, quarter it, take that quarter and cut it in half and breathe through it, all the time. That’s a good day. Now a bad day. Take that small sliver and cut it in half again and breathe through that. Now we’re talking. That’s what breathing with asthma is. Sounds cruddy huh? It is. Now an amazing day is when you actually have the regular quarter of the straw! Whoop! Top of the world right there! Then you decide to go to Walmart and get your huge stack of medicine from all of the doctor appointments and some bozo is wearing perfume. Yep now we are in the er. It changes that fast.
Now a little about my asthma. Because it’s me and I can’t be normal, I mean I’m always the oddball! So I have severe persistent, steroid resistant, cough variant asthma compounded by Ehlers-Danlos syndrome. Do What?! I know it’s a mouthful and you’ll need an inhaler by the time you spit it out. So basically I have severe asthma, that’s really hard to control, that steroids don’t help with very much, that causes me to cough all the time and my connective tissue disorder has attacked my lungs also and has screwed it all up to. Yep sounds about right. Ehlers Danlos Syndrome or EDS is a genetic connective tissue disorder that affects collagen, so anywhere there’s collagen has the potential to screw up. Guess what’s in the bronchioles, yep you guessed it collagen. So basically my lungs are double jointed also. Joy right. So that makes the asthma twice as hard to treat and control. Because of all of this I rarely wheeze, and I hide my symptoms very well. My pulse ox readings typically will be within normal limits, as will my pulmonary function tests. My signs and symptoms typically are rattling when I breathe, barking when I cough, cyanosis (blue or purple), and very tight lungs when you listen to my lungs and stridor or whistling through my throat.  When I get really bad that’s when it will effect my speech and that’s usually when I go to the ER. Most Er’s have NO idea how to treat me or my type of asthma and sends me home still speaking in 2 word sentences because my pulse ox is 98% even though my lips are blue, my fingers are purple and my lungs are completely locked up. I went and did a walk test in March expecting to pass with flying colors because it’s me and nothing ever works right with me and ended up leaving on oxygen. I’m now on oxygen 24 hours a day.
So how has this affected my daily living? Well I think you can probably guess if you have read all the way to here. I now have a shower chair because I pass out in the shower without it because of the exertion, I have gotten to where if I try to cook I’m gasping and blue and dizzy. On bad days trying to even go to the bathroom can cause me to passout. Any type of smells flares me up. Any type of exercise does also. I finally got my handicap decal for the car to help with walking at stores, talk about a bust to my pride. Cleaning is a huge chore and there are no products I can use anymore that doesn’t cause problems. I look back at my lost career and weep, that’s all I want to do is go back on my ambulance and help folks like me, not live this crappy life that I call a life. I’m not even a piece of a person I was. This horrible disease took everything from me and I hate it. I hate what it has did to me and I hate the disease.asthmatic since 2008. What changed? I don’t know I saw the wind changed directions or something. My usual spring attack hit and it still hasn’t stopped, it’s been 8 and a half years so far. Let me tell you a little about me.
Before the asthma ruled my life I was a firefighter paramedic. I saved lives and helped folks like me now. I rode horses, I hunted, fished, camped, 4 wheeled, trained dogs. I helped my mom and granny out. My mom was battling breast cancer. I was a normal woman I was a mom and a wife. I still am a mom and a wife to a different husband. I lost my career and my independence. I’m now tethered to an oxygen machine, like many of my patients were. I’m a professional patient now, I spend most of my time shuffling around to doctors appointments and trying to fight for social security because I can’t work anymore. I tease that I own half of wal mart pharmacy and I’m allergic to the other half of it, and all of the folks in the pharmacy knows me by name. Now let me tell you about living with this horrible disease that has stripped my freedom, and many more peoples freedom.
First off, what is asthma? We know the textbook definition, the airways inside the lungs constrict, or get smaller, causing trouble breathing. Sounds miserable doesn’t it? My definition is this. Take a coffee stirrer straw, quarter it, take that quarter and cut it in half and breathe through it, all the time. That’s a good day. Now a bad day. Take that small sliver and cut it in half again and breathe through that. Now we’re talking. That’s what breathing with asthma is. Sounds cruddy huh? It is. Now an amazing day is when you actually have the regular quarter of the straw! Whoop! Top of the world right there! Then you decide to go to Walmart and get your huge stack of medicine from all of the doctor appointments and some bozo is wearing perfume. Yep now we are in the er. It changes that fast.
Now a little about my asthma. Because it’s me and I can’t be normal, I mean I’m always the oddball! So I have severe persistent, steroid resistant, cough variant asthma compounded by Ehlers-Danlos syndrome. Do What?! I know it’s a mouthful and you’ll need an inhaler by the time you spit it out. So basically I have severe asthma, that’s really hard to control, that steroids don’t help with very much, that causes me to cough all the time and my connective tissue disorder has attacked my lungs also and has screwed it all up to. Yep sounds about right. Ehlers Danlos Syndrome or EDS is a genetic connective tissue disorder that affects collagen, so anywhere there’s collagen has the potential to screw up. Guess what’s in the bronchioles, yep you guessed it collagen. So basically my lungs are double jointed also. Joy right. So that makes the asthma twice as hard to treat and control. Because of all of this I rarely wheeze, and I hide my symptoms very well. My pulse ox readings typically will be within normal limits, as will my pulmonary function tests. My signs and symptoms typically are rattling when I breathe, barking when I cough, cyanosis (blue or purple), and very tight lungs when you listen to my lungs and stridor or whistling through my throat.  When I get really bad that’s when it will effect my speech and that’s usually when I go to the ER. Most Er’s have NO idea how to treat me or my type of asthma and sends me home still speaking in 2 word sentences because my pulse ox is 98% even though my lips are blue, my fingers are purple and my lungs are completely locked up. I went and did a walk test in March expecting to pass with flying colors because it’s me and nothing ever works right with me and ended up leaving on oxygen. I’m now on oxygen 24 hours a day.
So how has this affected my daily living? Well I think you can probably guess if you have read all the way to here. I now have a shower chair because I pass out in the shower without it because of the exertion, I have gotten to where if I try to cook I’m gasping and blue and dizzy. On bad days trying to even go to the bathroom can cause me to passout. Any type of smells flares me up. Any type of exercise does also. I finally got my handicap decal for the car to help with walking at stores, talk about a bust to my pride. Cleaning is a huge chore and there are no products I can use anymore that doesn’t cause problems. I look back at my lost career and weep, that’s all I want to do is go back on my ambulance and help folks like me, not live this crappy life that I call a life. I’m not even a piece of a person I was. This horrible disease took everything from me and I hate it. I hate what it has did to me and I hate the disease.

Sheila Brillhart

What happened to that sickly child…???

I have been on an incredible journey. I invite you to travel with me along my journey, to get to know the lessons I have learned. This is my story, my truth, my life.  I would not be the person I am today without having been the person I was.  My severe asthma has affected every aspect of my life, from my relationships, to education and career choices and to how I live day to day. I appreciate the gift of breathe a little more than most and I know without a doubt, Attitude is everything.

Just to be a kid again… The first real memory I have of having severe asthma was sitting in front of a humidifier and taking puffs off a Primatene mist inhaler. I was a very active kid, full of life. I had no idea that my rigorous “pretend” workouts so early in life would help me fight when assaulted by asthma attacks. I was a fighter from day one, dad would say. I was a sickly crabby baby, very allergic to mom’s milk and almost every other kind of milk. Dad swears I almost died of starvation and that’s why I’m such a fighter. As a kid I wanted to try everything everyone else was doing, if I couldn’t do it, I couldn’t do it, but I was going to try. My dream was to be the first women professional boxer. I wanted to fly like a butterfly and sting like a bee. Every day I would punch my boxing clown, go for a walk/run, do pull-ups, push-ups and sit-ups. I never thought of it as exercise. I would wheeze the entire time, trying to ignore the sounds, eventually I would tire out and lie on the ground, finally to make my way home to a good ol’ Primatene mist puff. As long as I can remember I have never known a day without a struggle to breathe.

It shouldn’t come as a surprise that I did everything in my power to hide my asthma. I despised being different, I never talked about it. I thought if I didn’t talk about it, it didn’t exist. The kids knew something was wrong because I couldn’t hide the constant wheezing coughing and gasping. I’d always say, “I’m good” as I gasped to breath, sometimes I would cough and wheeze until I vomited.  I hated the stares, question and feeling different.  As I got older I’d see people smoking and I’d feel so angry and appalled, if they only could breathe with my lungs for a day, they’d never smoke again!

In late December when I was a bit older living on my own in Philadelphia, the temperature changed and I caught a cold. As always I refused to cut down on work, volunteering or social activities.  The cold settled in my chest, did my best to ignore it. I refused to completely acknowledge how sick I was. Mentally I wasn’t ready to accept my reality.  I would calculate the amount of energy it would take to accomplish each task. What was so effortless yesterday was now more than just a challenge. Finally it all came crashing down. My lungs tighten up so tight not even a tiny wheeze could slip through, my chest hurt and the panic of suffocating was starting to settle in. I knew I had to keep  calm, not “freak out” or it would get much worse. I collapsed to my knees barley able to breathe. My manager rushed me to the ER.  At twenty-five I was immediately admitted for my first, of many “tune-ups” in the ICU.  Three weeks of doctors, nurses, respiratory, IV antibiotics, labs, nebs, nebs nebs…a boat load of IV steroids and the vest – a percussion vibrating devise that helps shake things up. It got old really quick so I did what I had to do to satisfy the docs so I could finally go home.  I despised all of it. I just wanted to get back to being my “normal” self.

I was discharged from the hospital but still wasn’t feeling great. I did my best to display the mask of normalcy for as long as I could, nonetheless was exhausted from putting on this performance.  Breathing had become very difficult once again.  I was constantly wheezing and coughing up nasty stuff, my lungs felt like they were slowly squeezing me to death. Each breathe was more and more difficult.  As always thought I could beat the infection on my own, and as always, I was wrong. I dragged myself in again; I was at a point that they could do anything to me, as long as they could help me breathe a little easier. This was no time to win a battle just to lose the war.  I was no longer buying time, I was stealing time.

Springtime had arrived and I was ready to LIVE! Ride my bike, take the top off the car, and go hiking. I absolutely loved to be outside.  I am originally from the dry area of New Mexico, this was my first spring on the wet East Coast, and I hadn’t counted on a new kind of Allergy season. Let’s just say I had trouble staying out of the hospital.  And all the side-effects from the steroids had sidelined me. The endless asthma attacks and constant infection took its toll. I felt ancient, as if my body was falling apart, one attack and one infection at a time.  A lifetime removed from the bubbly full of life women I had become.  I’ve always been such a fighter. But this time I gave in to my illness.  My legs were like noodles from all the steroids and I had developed pseudo gout in both knees so walking /working became super painful.  Life looked grim, I needed a doctor who understood how bad I was, this wasn’t just “asthma” this was “severe asthma” and these docs didn’t have any idea what to do with me.

I needed to be closer to family and get out of that environment so I packed my bags and moved to Colorado. They say when a door closes a window opens, it’s true. I landed a job and found a great doctor at National Jewish that believed in me, believed in more than statistics and someone else’s medical prognosis. I found Dr. Sally Wenzel. She did more than care for me she cared about me, she listened and really believed me; she was really going to help me. You could have knocked me over with a feather when she said, “I think you will qualify for a study we are doing”. What? There is HOPE?  I had been defeated for so long I’d grown comfortable with my disease, it was me. I think without the hope of the trial, my fate was sealed.  It was no small task getting into the SARP trial. Eventually after a few attempts I finally met all the requirements and was accepted into a one year trial. When the trial ended I was back to square one. But, I had a taste of how it felt to breathe just a bit easier.   I was alive not merely existing to breathe.

As time went on Dr. Wenzel would gently remind me to start showing some maturity about when to go in to be seen when I was starting to get sick. She would say, you need to stop being notorious for calling on a Friday afternoon to let us know how sick you’ve been all week. She was always good at giving me plenty of that proverbial rope. It was my one last act of defiance, by rebelling I was in charge, or so I thought. I thought if I didn’t acknowledge being sick it wasn’t really happening.  Sadly Dr. Wenzel moved to Pittsburgh to open and become the Director of the University of Pittsburgh’s Asthma Institute and the subsection Chief of Pulmonary, Allergy and Critical Care at the UPMC. I felt so completely and utterly defeated when she left. My last hope had vanished. No doctor could be as good as she was. Lost in my own recesses of my mind, it felt like it was all such a mistake.  Yet, I always knew Dr. Wenzel did not abandon me, she would call and check on me from time to time and she would have her partner at National Jewish watch over my care. Great doctors don’t just tell you what to do; they make you believe that you can do it. I had the best.

Mentally, I no longer want to be normal, I want to be healed.  Healing was my mantra. I devour any information; holistic, Chinese medicine, herbs, crystals, prayer and even a good old therapeutic message. I’ve always known I will never defeat my disease; it’s my partner for life. I had not asked for it and I was tired of accepting it.  I wanted someone to fix me, once and for all. I felt like I couldn’t let time slip through my fingers anymore, I needed to fix this. I still had a life full of meaning to experience. But, there were those days–many of them–when I would cry out, “I will do everything humanly possible to keep this disease from taking anything else away from me and I won’t allow myself to die choking and suffocating from this disease. I won’t allow myself to be defined by asthma.”  I do believe that the hardest lessons shape our character and define who we really are.  I have severe asthma it doesn’t have me.

My adventures continued as I started to feel in control. My health was better and somewhat predictable. I was ready to conquer the world.  So, naïve I was.  I took my career as a professional chef much more serious. The job of a chef is not an envious one. There’s the army of kitchen staff that needs managing in a hot, loud kitchen and the caterings of 50 to 1500 that require delicious and innovative dishes that must be timed despite their individual intricacies and complications. Being a chef has always required a person to be rigid, somewhat masculine and able to thrive in a tough environment.  It’s always been an industry where you have to make it by yourself; it takes its toll. It can be so stressful and demanding at times, it’s imperative to appear strong and demand respect so the kitchen will run smoothly. I didn’t want someone to say, you can’t hack it! In addition to the hordes of hungry customers I had to be ready for, the NSF inspector who would come through and rip us to sherds.

No surprise in the following weeks, I would end up in the hospital for a tune-up.  I didn’t tell anyone. Denial was my new middle name. I couldn’t bear the thought of colleagues showing up and seeing me hooked to an IV or take my neb treatments.  It was all to mortifying to contemplate.  I would do anything to maintain the appearance of normalcy.  Without missing a beat I was back to work after getting out of the hospital.  My routine started and ended with shower, breathing treatments and IV antibiotics.

As I finish with this part of life’s journey I am fortunate enough to share slices of my story with others.  Only a few will really understand my determination, stubbornness and appreciation for each and every breathe. Severe asthma has shaped my sense of self, how I perceive my own body and my perception of life. I have railed against it, denied it, defeated it and at times was elevated by it. Sometimes, I do look back at my life and wonder, if I could do it again would I change it? And the answer is, NO. I mean I could do without all the drama, illness and disruptions, but I wouldn’t be the women I am now without being the sickly child I was—Severe Asthma and all.

My Asthma – Patty Martino Marlin

The title says it all “My Asthma”. It’s very personal. It’s like a possession I own. It’s MINE.
I have found other asthmatics who understand what it’s like. Civilians say “oh it’s just asthma”. Asthma warriors say “MY ASTHMA”. I have other medical problems. Some brought on by asthma meds – some not. I don’t call them MY A-Fib or My Diabetes or My Sleep Apnea or My Arthritis. But, when it comes to Asthma, it’s MY ASTHMA.
Why so personal? A-Fib: I don’t have this all of the time. I’m on medicine. I had an ablation that cut episodes down tremendously. Occasionally been hospitalized for A-fib and sometimes TIA’s. Diabetes Type II – made worse by asthma – but treatable. Sleep Apnea – Cpap machine takes care of that . Arthritis – painful at times – but an nsaid usually takes care of that. All of these impact my life “sometimes”. While serious, they are not immediately life threatening.
Back to MY ASTHMA – My asthma impacts my life every day. Is it humid, is it too cold, are there chemicals, are there allergens? It’s like a minefield just going outside and facing these perils. In addition to that – Is anyone sick around me? – Am I going to get a cold, bronchitis, pneumonia? Sickness gradually (and it could be just 24 hrs.) brings on an asthma exacerbation. You know it’s coming and have some time to prepare but invariably you will wind up in the hospital. Triggers give no notice – Zero to 100 in a few seconds or minutes. You are in respiratory failure when you have been perfectly fine an hour before. Doctors in ER ask – Do you have a living will – Do you want us to do anything if you stop breathing…… I even think to myself “it’s just ASTHMA!!!!! What do you mean I may stop breathing? But, it’s not just asthma. It’s a terrible, deadly disease that impacts every day every minute of my life.
If one more person says to me “Oh is it just your asthma “ I am going to throw a tantrum. Occasionally I do pass out in front of people and then they say “You must have more than JUST ASTHMA”.
It’s – MY ASTHMA……….

Katrina Whiley

Life started out pretty normal, with a fun and healthy childhood with just a bit of hay fever seasonly, and asthma when unwell. A couple of puffs of ventolin and all was good again. At 18 I experienced my first attack that required medical assistance. I was taken to hospital via ambulance, and used a nebulizer for the first time. I stayed in hospital for 6 hours and was discharged with pred and regular ventolin. I was put on my first preventer. Over the next few years, I had the occasional attack, and spent no longer then 24 hours in hospital.

In January 2011, my home town of Brisbane Queensland Australia experienced its worst flooding in 100 years. My friends 2 story house had flood waters enter to the second story, destroying everything. Even the fridge was filled with water and silt. I helped hose out the kitchen, bathroom and bedroom on the top story, and 48 hours later I was admitted to hospital with costocondritis and asthma. From here the asthma attacks became much more frequent. On March 2nd, 2012, I presented to emergency with an asthma attack at 6am. It took 6 hours to settle it, and I was admitted overnight for observation. At 3pm I had a rebound attack, and a code blue was called. In the 100 metres from the ward to icu, I went into arrest. I was resuscitated and placed in an induced coma for 5 days. I have since been admitted a further 40 times, including a further 10 ICU stays. Asthma has taken over every aspect of my life, and prior planning is required for everything. I have a hospital bag packed at all times, and I don’t go anywhere without emergency medications.

In 2015 ive had 5 significant and some near fatal attacks. I have made a short video of my hospital stays in 2015.

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.