(This page last updated on 07-18-2024)
Yup, my real name is Steve, and my asthma is about as bad as it gets. We’re talking off the charts..bad!
The kind of asthma I have is much different than what most people think of when they hear the word “asthma”.
I like to call my type, Asthma 2.0
In medical terms I have what is generally referred to as “Severe persistent refractory asthma with complex airway disease Phenotype“. (Translation: really difficult to control asthma).
Though I entered this world wheezing, I wasn’t officially diagnosed with asthma until the age of 9. It’s thought that the repeated and ongoing assaults on my lungs from years of unchecked severe asthma exacerbations, caused what is referred to as “Remodeling”, which led to irreversible scarring of my larger airways. While there’s some evidence to suggest that remodeling might be partially reversed in mild asthma, it’s unlikely in those with more severe disease.
Unlike most asthmatics, I have symptoms (mostly shortness of breath), pretty much all the time. Quite often my symptoms escalate into full-blown, life-threatening exacerbations called “Status Asthmaticus“, which all too often lands me in the Intensive Care Unit. Essentially, my life is an endless cycle of severe exacerbations and stressful recovery periods. The chance that my asthma will ever improve is slim, so I try my best to optimize the relatively good days and not dwell too much on the bad ones.
Over the span of 6 decades, I’ve endured countless days on ventilators, Bi-Pap machines, Heliox and continuous nebs. As of Jan 2024, Ive racked up over 160 hospital admissions for this disease and have been intubated a jaw dropping 56 57 times!
What’s worse, is that I often develop severe ICU delirium/psychosis after coming off the ventilator, which keeps me in the hospital even longer and slows down my recovery.
In 2019, as a direct consequence of so many intubations, I developed Posterior Glottic Stenosis (PGS), where a band of scar tissue was tethering my vocal cords together, essentially blocking my upper airway and making it increasingly difficult to talk and breath, even when my asthma wasn’t flaring. Since then, Ive undergone multiple surgeries to repair and dilate that area. The condition is somewhat difficult to treat because the surgery to remove the scar tissue can actually cause more scar tissue to reform…kind of a catch 22. Fortunately, and thanks to a very skilled Otolaryngology team at UCSF, I have not required a tracheostomy, and hopefully as time passes will require fewer and fewer surgeries to keep my upper airway open.
More recently in the summer of 2021 we began investigating whether eosinophils might be contributing to the severity of my disease. Up to this point it had been difficult to assess because I had been on steroids for such a long time, which suppresses the production of eosinophils in the blood. Later that year I successfully weaned off oral steroids and we immediately noticed that I indeed had eosinophils and shortly after started on Fasenra. Im currently on dual biologic therapy with Benralizumab every 8 weeks and Tezepelumab every 4 weeks. While I don’t “feel” any better on the biologics, the exacerbations which land me in the hospital have been reduced by about 50%.
I also have a lot of mast cells and mucus cells in my airways. The presence of mast cells in the airways of severe asthmatics and the correlation of disease severity is currently
In the end and despite everything I’ve been through though, I consider myself luckier than some in that Ive managed to live a lot longer than most of my doctors thought I would. My life isnt always great, but whose is? The fact is, I suffer tremendously from this disease, but I have many good days as well. I’m also privileged to have some of the best asthma doctors in the world involved in my medical care, including Dr Sally Wenzel, Stephen Lazarus and John Fahy
