Dark and Twisty Severe Asthma
I am generally a pretty positive person. Especially, when it comes to health stuff. I usually take the good, the bad, and the ugly and deal with what is coming straight towards me. In a recent conversation with a dear friend and a super severe asthmatic, we were discussing how very few people talk about the deep, dark, and twisty parts of severe asthma and what it is like to live with a type of asthma that can be horrible. I hope to do justice to my dear friend with this post.
Differences in severe asthma experiences
While we are both severe, we live with very different, day to day life. They have had MANY ER admissions, intubations, and brushes with death. I have just had one of those experiences. They fear that they simply won't be able to breathe one day and the lights will go out forever.
I can usually get away most days with a rescue inhaler and feeling icky. They on the other hand are so impacted and now dealing with an extremely low FEV1, fixed airway obstruction from all the scarring and a body so beat up from steroids and other interventions, a lack of viable treatment options, and symptoms that seem to take so many minutes of their day.
Staying positive can be difficult
They are an extremely positive person but there are only so many times you can be positive when you are simply struggling to take a breath and do an everyday task. The focus changes from being able to do a zillion tasks in a day, to simply being able to survive the day to the best of your abilities.
There is a looming cloud over patients who hope that “today” will not be the day, that they have to go to the ER, intubated, out of their mind and body on “roids” and that they will not have to witness a family member sit by your side, unable to offer help for what ails them. Sometimes, this feel hurts more than what can physically come from having severe asthma. Watching the effect that your disease has on others. It has the ability to take hope away…
What does "severe asthma" mean?
The definition of Severe Asthma is currently evolving, especially as research is moving towards phenotypes and endotypes. The definition used by the ATS/ERS in 2013 is
"When a diagnosis of asthma is confirmed and comorbidities have been addressed, severe asthma is defined 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.”1
It's simply not impactful enough to describe a state of this disease that is so invasive that even lung transplant sits as an outskirt option of hope. There is limited knowledge about how transplants would even work in asthmatic patients and its viability is rather uncertain.
Not enough answers
While much is being done on the research front, there just are not enough answers yet… I strive to bring awareness to the devastation that this disease can bring to some. These are not a group of patients who have compliance issues, but a group of patients that have actually tried everything, some experimental, many outside the box but there just is not enough of the puzzle put together YET to have viable treatment options on the market.
I hope that awareness for this type of asthma will grow and that breakthroughs will happen.
Have you ever gotten "moon face" as a side effect of prednisone?