Eight months ago I came down with a cold which turned into one of my worst periods of uncontrolled asthma in years. Things hit a low point at the beginning of May when I was hospitalized for an asthma flare-up. The week after I left the hospital, things were really good and I thought that finally things would be over. My energy level was back to where it should be. I could sing which is hugely important to me. Breathing was easy and stopped drawing attention to itself. My peak flow was back to its personal best or at least close enough (480) without even needed ventolin. I felt healthy.... for about three days.
Since then things have been good some ways and really bad in other ways.
The good news is that I've gone two months without a major flare that required emergency help. I'm also down to 20mg pred and scheduled to be at 5mg in 3-4 weeks.
The bad news is that the level of symptoms that I'm supposed to ""just live with"" is really hard to live with and my doctor doesn't seem to have any ideas of how to make this liveable:
* my occasional asthma cough has turned into a cough that from time to time is so severe that it literally forces urine out of my bladder (not just a leak) - this goes beyond just bad breathing to embarrassment - even maxipads don't absorb it all.
* The on-going cough has also irritated my throat so much that sometimes when I cough the throat seizes up and I have trouble inhaling too, i.e. its triggering some sort of paradoxical vocal cord movement or other type of closure. I manage to stay calm and relax the throat so it isn't any danger but it still is not a nice feeling at all not to be able to pull air in. Truthfully it is scary even though I know I can manage and that that particular breathing problem is not asthma.
* I've also been waking up nearly every night coughing or finding it painful to breath and with a peak flow that is usually somewhere between 40-60% personal best. This leaves me exhausted during the day. I breathe better in the mid-mornings I can't get much done most mornings because I'm using my better breathing time in the mornings to catch up on sleep I couldn't get at night.
* My daytime peak flow keeps dropping lower and lower. For a long while after I got out of the hospital I was able to get my peak flow up to 90-95% personal best for at least part of the day. For the last two-three weeks I haven't been able to get above 85% even with ventolin and more and more I'm sitting around 60-75% during my best parts of the day. If this is me at 20mg what will I be like at 5mg or 0?
I haven't had a completely green day in nearly two months.
I've noticed the low peak flow affects me physically and emotionally even when it doesn't seem to have any associated symptoms. When I finally give in and use reliever, I can tell how much easier I breathe and I also notice myself relax emotionally as well. Somehow working just a bit harder at breathing even if I don't notice it consciously seems to be making me anxious.
Though nothing above is even close to life threatening, the trend just goes downward and downward.
I'm scared of two completely opposite things: that nothing life threatening will happen and that something life threatening will.
First I'm afraid that we'll get down to zero pred, I'll have lots of symptoms but since nothing is life threatening and I'm on everything, I'll be told ""go away - we can't do anything - just live with it"". My doctor is of the opinion that it is so important to taper the pred down to zero that nothing short of life threatening should raise it. The pulmonologist isn't quite that brutal, but he's not the one doing the day to day prescribing.
i've never had a life threatening attack, nor do I expect one. But then again when things just keep getting worse I do wonder where it will stop. I'm realizing that the possibility of suffering something truly beyond my ability to manage utterly terrifies me: I hate depending on anyone other than myself for something so vital as my life and if the worst happened obviously I couldn't depend on me because I'd be too sick. I then project the ""what if"" anxiety back onto the ever falling peak flow and see in it something worrisome rather than simply a problem to be solved with ventolin.
Which is another one of my bug-a-bears because I've developed a passionate hate of ventolin even though I know it helps...so I don't use it perhaps as much as I should and then I suffer more than I need to.
My allergist explained to me that one reason we have to push the taper so hard and let so many symptoms ride because we need to see how sick I'd be without prednisone in order to assess the cost-benefit of maintenance steroids and to make me eligible for various steroid sparing alternatives. . It makes sense but it really really sucks to have to get sick on purpose. (which is how I see it). And apparently, how sick I am isn't sick enough.
What also sucks is that all this could probably be avoided if only my lungs would wheeze on cue or if I didn't have such high personal bests for FEV1. Lucky me starts being symptomatic at 90% of my personal best (so far) but that works out to 110% predicted. 80% personal best = 100% predicted and to get to below 80% predicted I have to be in my red zone.
Even a 15% increase pre-post SABA isn't enough to prove that my uncontrolled symptoms are asthma, at least not for the doctors I'm seeing. (12% is considered sufficient by the ATS, BTS, and the Global Initiative on Asthma (GINA).) My peak flow diary doesn't count either because even my pulmonologist distrusts peak flow and derides it as the poor man's spirometry. The only thing that matters is ""% predicted"" or maybe a huge change in my own scores between two PFTs done in the lab.
My pulmonologist did agree that I should come in the next time I have a exacerbation and do a PFT (no appointment necessary), but that's more of the ""wait until you get really sick"" approach to diagnosis. And unfortunately there is no way to capture my normal daily ups and downs because my worst breathing hours are at night when the lab is closed and there is no one to do a PFT. So the only way to capture anything is for me to have a slow burn exacerbation where I can count on both day and night being well below predicted.
So I am really, really frustrated and upset despite things that should make me happy like ""no serious attacks in two months"".