A good treatment for bad asthma

While looking for something else, we stumbled upon an action-packed blog post by a patient with virulent, relentless asthma who was rescued by her UChicago physicians using a treatment with a scary name, but a comforting outcome. Her story also involves a tornado. Below, in her own words (slightly trimmed for space), Melody Papazis, RN, tells her harrowing tale.

For most of my life, it seemed like constant coughing and chest tightness would be a daily occurrence. When I was 14, my deep, dry cough caught the attention of a pediatric pulmonologist. I had asthma. I had it bad. He prescribed inhalers. This helped. During high school, I only landed in the hospital once.

In nursing school, I went on a home-health visit. The house was infested with cockroaches. I learned that day that roaches are especially problematic for people with asthma. I wound up in an intensive care unit twice that semester.

In my early 20s, I was otherwise healthy, a runner. This enabled me to ignore my asthma. Prednisone, a steroid that can reduce inflammation, became my best friend. Its side effects were my worst enemy.

Then my asthma progressed from moderate to severe. I was hospitalized about 15 times. Each time, I would wake up in the ICU in respiratory failure. But I loved my job as a pediatric pulmonary nurse. I worked with the doctor who first diagnosed my asthma. I stuck with it. I could empathize with my patients and their parents.

Nurses, the saying goes, make the worst patients. I was an excellent bad example. I spent hours each day teaching patients about peak flows and asthma action plans, but I never paid much attention to my own plan. I wheezed. I struggled to breathe.

My coworkers offered advice. I neglected to listen. I had multiple trips to the ER, and a frequent-flier ticket to the ICU. My hospital stays involve tubes down my throat, continuous nebulizer treatments, steroids, magnesium, fluids, all followed by lectures on how to take control of my asthma.

Eight months after I got married, my asthma, already bad, took a nose dive. This time, my pulmonologist sent me to the University of Chicago, one of the leading centers in the country, for a treatment called bronchial thermoplasty (BT).

Here’s how doctors think BT works. Smooth-muscle tissue lines the human airway. It serves no known purpose, but it causes many asthma symptoms. This tissue can be hypersensitive. When annoyed, it contracts, narrowing the breathing passages, making it hard to breathe.

In BT, doctors slip a thin flexible tube through the nose or mouth, down the throat and into the major airways of the lungs. Then they pass a smaller tube through the first tube. The tip of this inner tube has a tiny expandable heat source. It is positioned to touch smooth muscle that lines the airway. Then the heat source is turned on, to about 150 degrees Fahrenheit – a little cooler than a hot cup of coffee. That lasts for 10 seconds.

This heat gets rid of about half of the smooth muscle cells that line that segment of the airway. The catheter is repositioned and re-heated about 30 times, until all the accessible airways from one lobe of the lung have been treated. This takes about 45 minutes. It takes three treatments to reach the entire lung.

At the University of Chicago Medicine, asthma expert Dr. Stephen White listened to my lungs. They were functioning at less than 20 percent. After a pulmonary function test we met and he carefully explained my options.

  • First choice: Try bronchial thermoplasty.
  • Second choice: Prepare for a lung transplant.
  • Third choice: Die from asthma.

We ruled out choices two and three.

The U of C helped pioneer this treatment. They were part of the initial trials, beginning in 2006. BT was approved by the FDA in 2010. Nevertheless, it can be difficult to get insurance companies to cover BT. With my history, however, I got approved right away. Dr. White put me in touch with his colleague, another asthma specialist, Kyle Hogarth, the University’s BT specialist. Two months later I had my first procedure.

Bronchial thermoplasty, Hogarth explained, consists of three separate bronchoscopy procedures done under anesthesia. Each procedure takes roughly 40 minutes and involves a separate region of the lung.

Although it is usually performed on an outpatient setting, mine was done in the hospital. That was wise. My asthma, Dr. Hogarth told me, was more severe than had been previously studied.

I spent a week in the ICU after each of my three procedures. After they were completed, I had multiple visits to the ICU. My lungs were angry.

After five months, however, my lungs recovered. They opened up like never before. I could breathe freely. My peak flow prior to the treatments was 300. After BT, it zoomed up to 560. I went back to work. For the first time since I was 14, life was looking good for our family.

Then, at 11 am on Nov.13, 2013, a devastating tornado passed through my town, Washington, IL. It destroyed hundreds of homes and businesses. We were lucky. Our house was fine.

But my lungs were not fine. The airborne debris from the tornado annoyed everyone, but it was much worse for me. Despite BT, my lungs clamped down hard. I was in asthma crisis. I needed help, quick. By the time we got to Chicago, my oxygen level was down to 72 percent and falling. I lost consciousness in the clinic. I wound up on a ventilator for a day.

The air quality in my town took months to return to normal. I went to stay at my sister’s house in Missouri. I was in good hands there. Melissa is a nurse and her husband is an ER doctor. But I was homesick for my husband and my son. After three months, we felt it was safe to go back home.

Now comes the fun part. I did phenomenally well. I was never hospitalized. That had not happened to me since I was 19. I went back to work, started exercising again, and lived the life God gave me. When I come home from work, I am not exhausted. It’s amazing how breathing freely has raised my spirits and quality of life.

I still use three inhalers, but I no longer take daily prednisone. I have a great support system, crucial for anyone living with a chronic illness. My 12-year-old son Lance has diabetes. His strength and endurance give me extra courage. My husband, Chris, is possibly the world’s best. Without his help and encouragement, I would not be alive today.

In the end, with a lot of help, I chose not to let asthma define me. The trials I have endured strengthened me. I keep a plaque, a daily reminder, on my office wall. “Life is not measured by the breaths you take,” it says, “but by the moments that take your breath away.”

 

Article provided by https://sciencelife.uchospitals.edu/2017/03/28/a-good-treatment-for-bad-asthma/ posted by John Easton

ORAL MANIFISTATIONS OF ASTHMA

Most asthma patients and health care practitioners are familiar with the common oral side effects of

inhaled and systemic medications to control asthma. This may be a review for some of you, but may

contain new information for others.

SOME OF THE MOST COMMON SIDE EFFECTS OF INHALED AND SYSTEMIC ASTHMA MEDICATIONS:

1.) Thrush-the dreaded yeast infection that can arise from frequent use of inhaled corticosteroids.

2.) Mucous membrane irritation

3.) Dry mouth

SOME OF THE LESS FREQUENT SIDE EFFECTS:

1.) Low ph — acidity in the mouth

2.) Gastroesophageal reflux

3.) Tongue enlargement

4.) Burning sensation in the mouth or tongue

5.) Mouth breathing

Let’s look at these:

Oral inhaled and systemic medications can alter the “normal” bacterial counts in the mouth allowing the

yeast organisms to dramatically increase. This whitish, painful infection needs to be treated with

medication and is best prevented as we will talk about later.

Mucous membrane irritation is also associated with inhaled medications and can lead to oral infections

in the mouth and even further in the throat and esophagus.

Dry mouth-many medications, not just those associated with asthma, have as a side effect “dry mouth”.

The clinical manifestation of this is a dry mouth can lead to an increase in dental cavities, bad breath,

and gum disease(periodontitis).

In the less common side effect category is the possibility of lower ph in the mouth(higher acidity), again

leading to an increase in dental cavities(caries). Gastroesophageal reflux means that stomach acid

normally contained in the stomach backs up into the esophagus, again causing irritation and burning in

the esophagus and increasing the acid content in the mouth. Tongue enlargement, although rare,

obviously leads to more difficulty in breathing, swallowing, and even speaking . Burning mouth/tongue-

this is a very difficult to diagnose and control condition that is extremely uncomfortable to those

afflicted-making eating and speaking a painful experience. Mouth breathing-once again here we have

the beginnings of dry mouth, increase in dental caries, mouth soreness and the potential of yeast

growth due to the lack of saliva “bathing” the teeth to remove plaque and bacteria.

THEREFORE: BE VERY PROACTIVE IN YOUR DENTAL HEALTH

1.) RINSE YOUR MOUTH THOROUGHLY AFTER USING AN INHALER!!!!!!!

2.) Brush, floss, and rinse after each meal

3.) See your dentist for a thorough cleaning and exam every 3-4 months

4.) Look for “white spots” on the enamel of your teeth-a sign that acids are starting to weaken the

enamel possibly causing future problems

5.) Drink lots of water frequently. We are supposed to have 8 glasses of water(8X8 ounces) every

day-people with asthma should consume at least that and more

6.) AVOID SUGARY FOODS AND SNACKS-THIS IS THE “FOOD” BACTERIA NEED TO ATTACK THE TEETH

AND CAUSE CAVITIES AND GUM PROBLEMS

7.) Try sugarless gum (Xylitol containing) to increase saliva flow and to help clean the teeth if

brushing and flossing are not possible after a meal

8.) Use a spacer for your inhaler and make sure your health care professional has observed that

you are correctly inhaling the medication. This is to insure that the meds are not just stopping in

your mouth, but are actually getting deeply in to the lungs

9.) If you have a history of dental caries, dry mouth, or periodontal disease, talk to your dentist

about using fluoride rinses and/or fluoride trays. This use of topical fluoride can decrease the

possibility of cavities, gum disease and can even decrease sensitivity to cold and sweet things

Charles A. Matlach, DDS

Clinical Director AEGD

Advance Education in General Dentistry

A.T. Still University Arizona School of Dentistry and Oral Health

5835 E Still Circle

Mesa, Az 85206

THE LINK BETWEEN VITAMIN D AND ASTHMA

The exact etiology of asthma still remains a mystery to health care practitioners.  Part of the difficulty is that there are numerous forms and types of asthma and varying degrees of severity in the categories.  It is well known that asthma cases are on the increase dramatically since the 1960s, and many theories  exist to account for this—diet changes, environmental influences, a decrease in exercise and a lack of exposure to sunlight.(1) There has been significant research showing a correlation between Vitamin D intake and reduction in asthma severity.

Vitamin D has long been recognized to reduce inflammation (2), and “boost” the immune system. It has been theorized that this reduction in inflammation could help individuals suffering from asthma since asthma is inflammation of the airways.  The immune system helps the body to fight off infections,  so, in turn, reducing the chances of inflammation and subsequent infections after attacks.(3)

There are numerous studies linking Vitamin D intake with reduction in childhood asthma attacks and frequency, however, more research needs to be done to see if proper dosing of Vitamin D to newborns and infants can decrease the likelihood of developing asthma later in life.(4)

People living in areas with less sunshine, overcast winters and lower temperatures had higher rates of asthma and also had lower blood levels of Vitamin D. The lower Vitamin D levels make sense since this vitamin is produced by the body when in contact with sunlight.  The correlation for this is that we have many studies showing people that spend more time in the sun have reduced risk of asthma and reduced number of attacks.(5)(6)

The bottom line is, there are studies that show a major correlation between Vitamin D intake and decreased asthma incidence and attacks in children, and studies that show very little correlation(especially in adolescents and adults).(7)  Should we all take Vitamin during our lifetime as a preventative for asthma and severity of attacks if you have the disease?  How does this affect me and my family?  The best recommendation from the Vitamin D Council is: children take 1,000 units of Vitamin D a day for every 25 pounds of their weight up to 5,000 units for a 125 pound child or adolescent.  The same 5,000 units a day for adults-although the federal government has stated that up to 10,000 units will probably do you no harm. Vitamin D is stored in the body fat, so it is possible to over due it. Stick to the guidelines and consult your health care professional if you have and questions.

The Vitamin D Council also recommends that pregnant women take 6,000 units a day of D.  How this affects the risk of your child developing asthma later in life is not known, but it does appear to reduce some of the complications associated with pregnancy.(8)

In summary, my best advice is to follow the guidelines of the Vitamin D council for ALL age groups. If taken appropriately, Vitamin D can’t hurt you and it most certainly can help with your immune system,  an increase in skeletal strength, cardiovascular health, etc.  Get outside, exercise and enjoy the sunshine(in Moderation), take your appropriate supplements and consult your health care professional with any questions!

Charles A. Matlach, DDS  MM

Clinical Associate Director, AEGD

A.T.Still University  Az School  of Dentistry and Oral Health

5835 E. Still Circle

Mesa, Az. 85206

480-248-8107

 

References

  1. National Institute of Health. What is Asthma? 2014
  2. Gupta, A., Bush, A., Hawrylowicz., et al., Vitamin D and Asthma in Children.

Paediatr  Respir Rev, 2012. 13(4): p. 236-43

  1. Ibid
  2. Niruban, S.J., Alagiakrishan, K., Beach,J., et al., Association Between Vitamin D

And Respiratory Outcomes in Canadian Adolescents and Adults. J Asthma, 2015: p.1-33

  1. Krstic, G., Asthma Prevalence Associated with Geographical Latitude and Regional Insolation
  2. In the United Sates of America and Australia Plos One, 2011. 6(4): p. e14892
  3. Castro, M., et al., Effect of Vitamin D3 on Asthma Treatment Failures in Adults with Severe

Bronchial Asthma and lower Vitamin D Levels. JAMA, 2014. 311(20): p. 2083-91

  1. Wagner, CL., Baggerly, C., McDonnell, S., Baggerly, KA., French, CB., et al., Post Hoc Analysis
  2. Of Vitamin D Status and Reduced Risk of Preterm Birth in Two Vitamin D Pregnancy Cohort Compared with South Carolina March of Dimes Rates. Steroid Biochem Mol Bio. 2015 Nov7

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.