Dark and Twisty Severe Asthma.

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. 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 breath 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.

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 to 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 that 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 transplant would even work in asthmatic patients and its viability is rather uncertain. 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. International ERS/ATS Guidelines on Definition, Evaluation, and Treatment of Severe Asthma • 2013 https://www.thoracic.org/statements/resources/allergy-asthma/severe-asthma-full.pdf

Comments

View Comments (11)
  • kcirmot
    9 months ago

    Wow. So true. Thank you for explaining stuff that we all suffer through but have a hard time explaining! Breathe easy, friend.

  • Leon Lebowitz, RRT moderator
    9 months ago

    It’s our pleasure, kcirmot. I’m sure DiaSWS will be gratified to read your comment.
    All the best,
    Leon (site moderator)

  • paucarog
    11 months ago

    Thank’s for the article. Is true there’s a dark side in every desease, is a continuous fight in the dark, every second fighting for a breath. But is also a great challenge with yourself to win that fight everyday. To appreciate things that most people don’t see. To love yourself for being a strong person that don’t give up. All my energy and best wishes from Chile, South America.

  • mjmody1
    11 months ago

    Thank you for your post, it is put very rightly to take the good with the bad and the ugly. Clinically, this is how my asthma progressed: childhood asthma > AERD (samter’s triad) > EGPA (churg-strauss). From a management perspective, nucala has proven to be more effective biologic than xolair. This is only my experience and fasenra may be another option. My emergency kit includes rescue/maintenance inhalers as well as a nebulizer and albuterol-sulfate. Over time, I’ve developed a sensitivity to ipratropium-bromide, spiriva and tiotropium bromide. Adding to this all is a sinus rinse (neti-pot) routine to irrigate sinuses. Praying for a one-and-done fix or cure.

  • ColoradoGirl
    2 years ago

    As a “Severe Asthmatic” I am so grateful for this article being published..I only hope a future article will include the mental/emotional side of this horrible disease.. The depression of Dr.s not understanding your specific type of asthma( but you’re not wheezing) to the horrible mood swings and weight gain of necessary steroids to the depression of being an extremely active person who can do nothing but sit propped up on the bed or couch because laying flat makes it hard to breathe and any physical activity will throw you right back into a flair up and let’s not forget the daily hell of the “controller medications/emergency medications” constantly shaking, anxiety, increased heart rate to the point your sure at any moment your heart wild pound right out of your chest, and with all that you still can’t catch your breath..

  • GardenStateVariety
    9 months ago

    Yes, I know exactly what you mean. I’ve had a respite from the couch routine as my hormones are suppressed while nursing, but I’ve lost enough weight that both my OB and my asthma doc want me to wean. As I’m weaning, I’m already seeing the symptoms and the attacks getting worse and more frequent. I’m terrified of what’s coming, especially since summer is upon us (always worse), and since I’m here trying to care for a little one when I know soon I can’t care for myself.

  • dixiestix
    1 year ago

    It’s been a week since I got out of the hospital. For the entire month of January, I have either been in a hospital bed or on my couch. Multiple doses of steroids and antibiotics for two weeks didn’t help and led to an ER visit and admission. What frightens me, is that until the age of 56, I’ve never been hospitalized before. Now I’m afraid of it happening again. My asthma doc is amazing and really thinks outside of the box. Clearly Xolair didn’t help prevent this, so he will see if I’m elegible for another type of biological. Most people have no idea how serious asthma is. Even my husband didn’t comprehend that I could’ve died.

  • raindrop
    1 year ago

    I’m so sorry and I send you lots of hugs

  • Leon Lebowitz, RRT moderator
    2 years ago

    Hi ColoradoGirl and thanks for your post. In view of your concerns about the emotional aspects of living with asthma, I thought you might find it helpful to look over this material: First, this article on strong emotions: https://asthma.net/triggers/strong-emotions-stress-depression/. And next, this essay on anxiety, depression and asthma: https://asthma.net/symptoms/anxiety-and-depression/.
    I also thought you might find this article that addresses wheezing/not wheezing to be particularly appropriate: https://asthma.net/living/not-asthmatics-wheeze-not-wheezing-asthma/.

    We’re glad to have you as part of our online community and look forward to your continued participation.
    Warm regards,
    Leon (site moderator)

  • Leon Lebowitz, RRT moderator
    9 months ago

    Hi anntimberlake and thanks for your post. It’s our pleasure to provide support and assist in any way that we can. Please feel free to familiarize yourself with our site, asthma.net. We have a wealth of interesting material throughout the site all focused on asthma and asthma related topics and issues.
    We’re glad you found our group too; you are always welcome here!
    Leon (site moderator)

  • anntimberlake
    9 months ago

    Thank you, Leon. I am new here and am eager to read each of these articles. I was diagnosed about a year ago. I also have NSIP, a form of pulmonary fibrosis, and mild chronic bronchitis from sinusitis. I have been attributing all my problems to the PF but since I have been reading about severe asthma, I am thinking that may be the one that is worsening. I know almost nothing about it. I use a Flovent disc twice a day and a Xopenex inhaler as needed. I seem to be allergic to Albuterol because one use makes me cough terribly for about 24 hours. Therefore, I won’t go to any of the ERs. I just try to deal with it by myself. Glad I found this group.

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