(This page last updated on 01-18-2024)

[My home away from home]

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 refractory asthma with complex airway disease Phenotype“. (Translation: really difficult to control asthma). Excluding bronchial thermosplasty, which would probably kill me, Ive undergone just about every medical treatment available for asthma, including experimental drugs.

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.

Though I entered this world wheezing, I wasn’t officially diagnosed with asthma until the age of 9. It’s thought that repeated 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 airways, especially the smaller ones. 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.

Additionally, in January 2019, after experiencing some unusual inspiratory stridor, it was discovered that I had a band of scar tissue tethering my vocal cords together, essentially blocking my upper airway and making it increasingly difficult to talk and breath. Since then, I’ve undergone  multiple surgeries to repair and dilate that area. The condition known as “Posterior Glottic Stenosis” caused by so many intubations for my asthma, 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 my very skilled Otolaryngologist, Matthew Russell, I have not required a tracheostomy, and hopefully as time passes, I’ll require fewer and fewer surgeries to keep my upper airway open.

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 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’ve 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. In a matter of just 2 weeks after stopping the steroids they went from zero to over 400. With that confirmation I began receiving Fasenra (benralizumab) injections, and as of 6/2022 it seems to be helping as evidenced by fewer and milder exacerbations.

Notably, I also have an extraordinary amount 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 being studied by the researchers at  S.A.R.P (severe asthma research program).

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 a lot from this disease, but I have 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, John Fahy and my Otolaryngologist, Matthew Russell.

Sally Wenzel, Pulmonologist and Severe Asthma Researcher, UPMC
John Fahy Pulmonologist and Severe Asthma Researcher, UCSF
Matthew Russell, Otolaryngologist, UCSF
Gina Moreno-John, my Primary Care Doctor, UCSF