I still have asthma

With all the attention focused on my recent neck surgery and complications related to it, even I sometimes forget that I have still suffer from really bad asthma. Im not always aware of it, but it’s always in the background. That is, until I wake-up gasping for air, which happens pretty much on nightly basis or when I find myself working harder than usual to breath from whatever the trigger du jour might be. That’s when it hits me like a sledgehammer, dude you still have wickedly bad asthma.

That said, I do seem to be having some success with the biologic asthma medications. Since adding one to my treatment regimen a year ago, I haven’t had as many severe exacerbations. It’s kind of refreshing not to feel compelled to write about another asthma hospitalization that I just had, or the nightmare of being intubated and suffering the horrors of ICU induced delirium. Yes, my asthma for lack of a better term, seems to be more stable than it has been in for a while. Ah, but it’s not a fairytale ending. Despite these awesome new drugs, symptom wise, I remain short of breath a good portion of the time and continue to experience frequent bouts of air trapping, chest tightness and moderate flare ups. I still require neb treatments around the clock and doing anything physically demanding, like fitness walking, is still a challenge.

As for the asthma biologics, most of them target Eosinophils. How much of role eosinophils actually play in my particular type of asthma is questionable. While my blood eosin levels were elevated before starting on Fasenra, they weren’t astronomically high like many who have Bonafide “E” asthma. But the fact that my blood levels have been ZERO during this stable breathing period, it leads me to believe that the eosinophils, regardless of their numbers, were indeed contributing in some way to the severity of my asthma and its wild up and down swings.

As far as my Pulmonary Functions numbers (PFTs) go, unlike those who have uncomplicated severe asthma, mine haven’t improved at all since starting on any of the Biologic meds. My FEV1 is still a dismal 28 to 30%. Disappointing for sure, but not at all surprising. Decades of repeated assaults from frequent and unchecked exacerbations has no doubt led to some irreversible damage of my airways, what they call “remodeling”. Airwave Oscillometry, which uses sound waves to measure lung resistance in the airways, pretty much corroborates those finding as you can see by all the “Red” on my last test in July. To my knowledge there are no drugs out there or in the pipeline that can repair or reverse lung damage. The key obviously is to prevent any further decline, and so far, I’ve been able to do that…. maybe even better than most. Whether it’s the various drug combinations or a lifestyle that includes daily exercise, my PFT numbers haven’t changed much over the past 20 years. They haven’t improved, but they haven’t decreased significantly either. It is what it is, so I try to live the best I can within those parameters.

So while it’s true that asthma hasn’t been at the top of my worry list lately, it’s still quite severe and it continues to impact my quality of life considerably. I do however appreciate the tamped down effect the Fasenra seems to have on the “exacerbation rollercoaster” that Im usually on. Again, I still have frequent flares, but they don’t seem to escalate into the severe zone quite as fast. They buy me that extra little bit of time so that I can get oral steroids on board and working before I totally fall off the exacerbation cliff and into the hospital abyss.

I guess what Im trying to say, is that even though things have been relatively quiet on the asthma front this year, I still suffer greatly from this disease. And while the biologics haven’t really improved my day-to-day quality of life, Im pretty sure they’re helping keep me out of the hospital and off life-support for extended periods of time. If nothing else, they’re saving healthcare dollars and probably my sanity. Being a constant patient just makes it harder to forget youre sick.

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2 thoughts on “I still have asthma

  1. Hi Stephen, I am an RT for 42 years and now started my own company to help asthmatics and other chronic conditions. Read your blog about biologics and agree they finally have another tool in their bag. There’s a million things I want to share but have a million questions. I’m sure you have been under the care of the greatest pulmonologist so my advice is coming from a guy who takes care of the asthmatic in the ED, the ICU and hopefully home as you have been able to do.
    Your FEV1 at 30% is probably one of the lowest I have seen in all my years. So without looking at it and knowing about remodeling it could be that you have some long term mucus plugging as well to reduce the flow that much. If you are familiar with IPV intrapulmonary Percussive Ventilation, it is a great tool and used at home in the CF world who also end up with COPD via long term expiratory flow issues with chronic inflammation.
    As i said would love to talk, my info below if you ever have time.

    1. Hi Antonio, thank you for reaching out. Yes, Im familiar with IVP and have tried it but no real improvement. My mucus plugs are in my distal airways and are very tiny, most the of them the size of a grain of sand. Im currently involved in a study at UCSF that is researching this phenomenon. Thank you

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