Written on 11-08-2021 and updated on 11-24-2021
As I write this post, I find myself halfway through day #3 of a so-called slow onset exacerbation, or what I call a “creeper flare”. I decided to write this post during the middle of this type of flare, not only to capture my thoughts in the present moment, but also as a way to distract myself from the increasing effort it takes to breath.
The best way for me to write about what my symptoms feel like …. is by living it. If I wait until the flare passes or I start to feel better, I will have forgotten what the experience was a like when it was actually happening. You would think that because I’ve gone through this process so many time (yes, it’s a process) that the experience would stick with me, but they don’t. Thank God for that.
What sucks most about a creeper flare, is just that, it creeps up on you. It’s the insidious nature in which your symptoms (ie shortness of breath) slowly sneak up on you. Once it takes hold, it usually titers back and forth between a feeling of mild breathing discomfort to a full-on gasping for air, feel like Im suffocating feeling and back again.
With a sudden or fast-onset attack, you’re usually fully aware of what’s happening; there’s no guesswork involved, you know you’re short of breath, you know you’re tight and you react instinctively. Hopefully in the right manner or sequence and do what you need to do. Not so, with these slower onset flares. Because they come on much more gradually and with less intensity, you cant really slam them with your entire arsenal. You really have to wait to see how bad they might get, so you can gauge how much countermeasure you’ll need to help mitigate or reverse them.
So here we are. During the past 60 something hours I’ve already done all the preemptive stuff you’re supposed at the earliest signs of an exacerbation, like increasing the frequency of your nebulizer treatments or MDIs, loading up with steroids, giving your doctor a heads up, keeping an eye on your PFTs (peak flow) and having a plan in place on how to get to the hospital if gets to that point. Doing all these things doesn’t necessarily guarantee that that flare will reverse and that things will turn around, it’s more like you’re buying some extra time. I think thats really the really key element…time. Unlike sudden onset attacks that can come on abruptly with a vengeance, but then tend to peak rather quickly, creeper attacks can take days to gather steam and you’re never quite sure how bad things might get until it’s usually too late to switch course. And by that, I mean, will I need to go to the hospital?
Believe it or not, I do have a plan. If this flare continues at the same intensity for the next 12 hours, or doesn’t improve, I will head to the Emergency room and let them take over. If my symptoms, ie peak flows or O2 sats worsen, I will go in sooner. You have to use objective data to to make a decision and not let your anxiety make the call.
11 hours has now passed since I began writing this post. During that time, my breathing has gone from bad to slightly better, to a lot better, to bad again. Though I’m pretty wired from all the prednisone, I was able to fall asleep for several 15 – 20 min intervals while sitting up in bed. During the night I did 3 neb treatments and took 4 to 5 hits off my inhaler. I finally got out of bed at 3:50 am to see how short of breath I would be when moving around. Yes, dyspnea or shortness of breath on exertion is an important distinction when it comes to analyzing your breathlessness, because its presence indicates that you’re probably sicker than you think you are. When I first got out of bed my dyspnea wasn’t too bad and I was actually able to eat a small bowel of Cheerios. I was hungry and I figured Id better get something in my stomach, because if I end up in the Hospital Ill probably be NPO for at least 3-4 days. After I finished eating, I sat back down at the computer and starting getting short of breath and tight again. Time for another breathing treatment and time to get my act together as to what Im going to about this exacerbation.
It’s now been a full 72 hours since this flare began and despite taking a ton of medication, Im not getting better. As much as I dread it, I cant waste any more time, I need to go the hospital for treatment. The time for analyzing symptoms and trying to nip this flare in the bud, is over. can’t waste any more time or I risk the real possibility of ending up in the ICU, or worse, on a ventilator.
Ill end this post now so that I can throw some things in a bag and get my partner to drive to the ER. Thank you for listening to my jabbering. Will follow up as soon as Im able.
Update: On 11-09-2021, the date of my last entry for this blog post and despite doing everything correctly, I was indeed Hospitalized and put on a ventilator. Because Ive already briefly mentioned this hospitalization in a subsequent blog post, and because Im too burned out to write one from scratch, Im going to share a portion of the voluminous medical records from this Hospitalization to tell the story. You don’t really need to be a medical professional to figure out what is being said in the notes. If you’ve ever been hospitalized for this disease, especially more than a handful of times, chances are you’ll be able to glean some familiar or maybe even useful information from it. Again, these are my actual Hospital Medical Records.
Btw, this is the what someone with a creeper flare looks like full circle from start to finish, excluding a full recovery photo, which can take weeks.
The first photo was taken on day #2 of the flare. The “Uncertainty phase”.
This is the same flare 2 days later. The “No question about it, Im sick phase”.
This is obviously during the height of the flare or the “Oh shit, this could actually kill me phase”.
This is the tail end of the flare 12 days later photo. The “I just want things to get back to normal so I can get the hell out of here phase”
And lastly, the obligatory first torture walk photo after hospitalization, aka, the “FUCK YOU ASTHMA! PHASE”