Elite Asthma Fighter ( adj.): A “Badassmatic” who in the face of constant and severe exacerbations, is relentless in the fight and refuses to give in.
Obviously all asthma flares that are severe enough to warrant treatment in an intensive care unit are bad, but for some of us, even the more potent and potentially fatal attacks are kids play. In dealing with a bad asthma flare, it’s not just about surviving it; your chances of coming out alive on the other end are actually very good. What can be really be difficult to endure however, is the fight itself. It’s always hard to get through these things, but sometimes its ridiculously hard. Those of us who have come up through the ranks and those who are fighters, will eventually earn the status of what I like to call “Elite Asthma Fight Club Status”. These are people who’ve gone above and beyond the occasional bad flare up, and who struggle day to day both in and out of the hospital, just to stay afloat with their asthma. Sad but proud to say, after 140 hospitalizations for this disease, I am now a permanent member of that prestigious club… the club that nobody wants to join. So lets get this asthma gong show on the road, shall we?
BTW, I’m formulating my thoughts on the fly here, so bare with me. Essentially what happened is that I missed out on doing the half marathon in Canada on October 14th, 2018 that Id trained so hard for, due to multiple back to back asthma flares and hospitalizations that never seemed to end. Sure, Ive had to miss out on races before due to bad asthma exacerbations popping up at the last minute, but this one was special and was supposed to be sort of a comeback race for me. The training for it was difficult and I invested significant funds in shoes and travel expenses and logistics.
I suppose in the scheme of things, missing out on a race, regardless of how important it may have seemed at the time, is nothing compared to fighting for your life against an opponent that happens to your own disease. In the end I still came out ahead and achieved Elite status. It may have not been for trekking a 13 mile foot course as planned, but I did cross a finish line of sorts and was still declared the winner.
Below is a photo chronology of what the heck Im talking about:
This is what an Elite Asthma fighter looks like after a 28 day asthma fight. Pretty sobering eh? In total I spent 26 days in the hospital. Was intubated twice for respiratory failure. Had multiple bouts of ICU psychosis while in the unit. Lost 9Kgs of body weight, down to 53Kg (119lbs)from 62Kgs. As of this writing ( the day after discharge), despite improvements in my breathing and a ton of medications, Im still very short of breath requiring neb treatments every couple hours. My muscles have atrophied so much I can barely walk. In the hospital I required both physical and Occupational therapy to learn walk without falling over ( not good for an endurance walker) and sessions with a Nutritionist to get my weight back up. And while Im now down to 60 mg of pred, Im still suffering bouts of psychosis from it, for which I have to take antipsychotic medications.
As of this writing Im out the of the hospital and in recovery mode, but as with most Elite Asthma Fighters, coming home means the party has just started. The critical part of the fight is over, but I will be on tons of medications for weeks and rehab for months. But here’s the thing, while it may take some time, Elite Asthma Fighters ALWAYS bounce back. And I for one, WILL NEVER EVER give up my right to a life free of breathing problems. I was born fighting this disease and will continue so till I take my last breath.
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You are so strong Stephen. My asthma hasnt been so bad in years. I take a powder inhaler for maintenance once a day. I dont envy but at the same time your strength and positive attitude leaves me envious of the man you are. I have no doubt you will keep fighting till the ripe old age of 101. And I will be cheering you on all the way.
So kind of you. Not sure I want to be around till Im 101, but who knows. You’re not alone, asthmatics seem to be suffering more than usual this year. I think part of it is climate change, smoke from wildfires and just the stress of modern life in general.
Steve Xx
I was wondering how the race went. That’s a long time in the hospital. I’m afraid to leave my husband alone for fear he will have an emergency. Getting cabin fever!
Thank you! YES, I’ve had my fill of hospitals for the year. Does your husband have asthma?
Stay strong-that’s a massive hospital stay. I did 11 in a row and it’s no club med. we do what we need to stay alive and breath. Also-the N95 masks don’t have anything on a respirator mask-just wondering if you’ve tried them instead. I swear by them.
So sorry you didn’t make the race . But this is a really inspiring post! I know that sounds odd, but this is reality, you’re showing us how to live with asthma not just succumbing to it on a daily basis.
Thanks to your inspirational blog, I have found a personal trainer and have managed to exercise for the first time in many years. I am starting from a very low baseline ( 45 second walk ) but after three months I’m already boxing and managing to run the length of the gym! I can’t believe it, but it’s happening. I make my PT, “Big Steve” ( 6’ 4”) read some of your posts Stephen , and he and I have discusssd managing the asthma in light of your huge knowledge and experience. You are helping so many of us, keep going. Sending healing thoughts and love and prayers to you. ?
Thank you Rachel, such a kind and thoughtful comment, I appreciate it. Im always happy to hear that people are helped by my stories. Congrats on your new workouts, we’ll make jock of you yet.
Steve Xx
Hello Stephen
First apologies for not catching up with your blog for a long time. So very glad to get back in touch. Wow…. what an inspiration you are. Reading something you wrote a while back you said it was looking as if you had a form of fibrotic bronchiolitis. And way back, before then, I had said to you that I believed I had obliterative bronchiolitis. You said you hoped not as it was a nasty one. I finally got the diagnosis of OB from the Royal Brompton Hospital in London, last December. In fact it was a relief, as I had known I had it for several years. I also have chronic thromboembolic disease, which gives me mild pulmonary hypertension which worsens on exercise. We all sooooo admire your strength and courage. Well done. I shall follow your next escapade with great interest.
Love and the gentlest of hugs
Kate xxx
Howdy Stephen – Thank-you for the update and I was looking forward to reading about the race but I suspect you are already looking for your next event. I paid attention to the wild fires fires in California and they were bad and scary for people with asthma for sure, I used to climb mountains in Colorado; I recall one year taking pictures as we climbed Long’s Peak (a 14,000 foot mountain) – in the early morning the sky was red and my pictures came out with the mountain looking red as well, The effect was from the smoke blowing in from further west – it reached Colorado and points further east. Hiking the mountains of Colorado was one of my favorite things to do.
I appreciate your posts and pictures as I do not know anyone with Asthma to gain insight into the disease. I find doctors very useful but they always have other patients to see so little time to chit-chat. I agree with the others that you are an excellent role model for how to deal with adversity. So many people give up when they face even minor problems and you certainly are not one of them.
Hi Bruce.
You know me well…lol. It’s been a very slow and difficult recovery this most recent exacerbation, but I will definitely be planning another race. Not sure when or where yet.
Back in 2008 I had planned on doing this race to the summit of Mt Evans in Colorado. But as luck would have it, my asthma went crazy at the last minute and I ended up in the hospital instead. A friend of mine who has severe emphysema, has done the climb himself, hauling his O2 tanks behind him.
How’s your asthma been lately?
Stay strong, Stephen! You continue to inspire me every day. As I keep struggling to find medications that will help manage my symptoms, I find that seeing your strength helps me to find strength within myself. Thank you for providing that support to all of us!
I’m sorry you missed your race and ended up in the hospital. 28 days, wow. I though 8 days was bad. I want to say again Thank You for your blog. It helps me to feel a lot less alone in this struggle. I wish you all the best and hope your breathing improves.
Hi Stephen. I’m not asthmatic but my 44 year old daughter has had asthma since the age of 4. I have turned her on to your blog and it has given her strength. She is having trouble right now as she has gained so much weight and during her hospitalization was almost given Zithromax which she is allergic to. She asked the nurse what the bag was and told the nurse that had it been given, it could’ve killed her.
Anyway, thank you for your blog. I’m sorry you missed your race but I truly understand the struggle.