It feels good to brag about something positive for a change. This week marks 15 whole months since Ive had to have a tube shoved down my windpipe in order to breath. Ive had zero, what I would call “critical condition” type hospitalizations in that time period as well. Granted, I’m still ending up in the in the ICU way more than I care to, but I’ve also managed to bounce back relatively quickly from the exacerbations that land me in there in the first place, so this is actually good news.
To what do I owe this small victory? What’s changed? (both of my Pulmonologist have asked me that question several times).
My asthma certainly isn’t getting better, on the contrary, my symptoms have never been worse. And while my PFTs have held relatively steady the past 3 years in the severe zone, I’m now down to less than 6 hours a day of decent breathing. After that it’s varies from mildly uncomfortable, to just shoot me in the head and get it over with. The constant shortness of breath is also impacting my ability to exercise(ie walk). The most I can tolerate now is about 3 miles a day with multiple rest breaks. Don’t laugh, that’s down from at least 5 miles a day just 2 years ago. So no, my asthma isn’t getting better.
So if the severity of my asthma hasn’t changed, what has?
Well, a couple things come to mind. First and foremost Im taking my brand of asthma more seriously now. Ive decided not to give another ER doctor the excuse to invoke that all to familiar accusatory grumble “Why did you wait so long to come in this time!!”. To that end I think I’m finally getting better at recognizing a severe exacerbation when it’s still in the brewing stages and then stomping on it as aggressively as I can. Sometimes that means having to hit up the ER when Ive only been sick for a day or two, as opposed to holding off thinking that this is the one I can turn around on my own (which rarely happens). It means not caring what the ER Nurse thinks if my sats are still in the 90’s. It means checking my PFs and FEV1s religiously throughout the day, sick or not and pre-nebbing before any type of prolonged physical activity.It means being constantly aware of potential environmental triggers, the weather forecast and the air quality both indoors and out. It means not over eating or under eating. It means keeping emotional stress at a minimum. It means dealing with symptoms as they happen instead of ignoring them till they get really bad. It means doing the things that all asthmatics should do to some degree, but on a much stricter and much more frequent basis.
Secondly, unless my lungs are clamping down really fast or I’m totally pooped out (from ignoring my advise of seeking early treatment), Ive been much more compliant about agreeing to go on Bipap as soon as possible (usually within 30 minutes of arriving at the ER)instead of waiting till I’m literally turning blue.
Bipap has pretty much become the first line of defense nowadays in preventing and/or reversing asthmatic respiratory failure, mainly because it’s safer. Of course, Bipap doesn’t always work on super tight or really sick asthmatics and some will still need to be intubated in order to save their lives, but overall Bipap has a good track record of preventing bad exacerbations from getting really bad.
I admit I’m not a fan of having a Bipap mask strapped to my face for hours on end and suffering the worse dry mouth you can possibly imagine, but the alternative is much harder on the body and very risky, namely, intubation.
While a little easier to tolerate (because you’re basically in an induced coma), complications such as nosocomial infections, baraotrauma ( ie pneumothorax, collapsed lung), sedation problems,a nasty sore throat afterwards and even the inability to breath on your own again are real concerns when a person is intubated and mechanically ventilated for asthma.
One would naturally assume that taking preemptive measures to thwart off potentially severe attacks would reduce hospital admissions, but ironically in people like me with really unstable asthma, it often results in more hospital admissions (5 admissions in just the last 13 months). However, the overall number of days Ive spent in the hospital has decreased, which means less money spent on taking care of this asthmatic, less time being exposed to hospital germs and less chance of complications in general. So a win win for everyone.