Not sure what’s going on. Since 2003 when my asthma started to get really bad, it was for the most part, relatively stable and the symptoms tolerable for several months at a time. Even the exacerbations, while still very severe on occasion, were somewhat predictable. Likewise, my lung function, specifically my FEV1 and FVC, though pretty crappy, seemed to plateau in the 37-44% and 60-70% predicted range respectively. Exercise, ie walking, I think played a huge role in maintaining that stability . But here it is 2016 , and almost on the turn of a dime, I seem to have fallen off the proverbial asthma cliff. My PFT numbers have dropped another 10% and there doesn’t seem to be such a thing as a minor flare up anymore.
If you’re reading my blog for the first time, Im a life-long, exacerbation prone asthmatic with a high frequency of flare ups, which have increased significantly over just the past couple of years. Between Jan 2015 and Jan 2016, I had 9 severe exacerbations, about one every 6 weeks. Of those 9 exacerbations, 7 resulted in hospitalizations, 3 of them requiring intubation. This is crazy, something has to be done to help cut down on these numbers, both in terms of lowering the associated healthcare costs and the huge toll that all of this is taking on my body, my emotional health and quality of life. I can’t keep going through this. Im so sick of being sick.
So why is this happening, and why now? What’s changed in the last 2 years? Is it because Im getting older? Is it because Im not able to walk as much as I did just 2 years ago? Is it because of environmental changes? Is because my asthma is getting worse? I just dont know, nor does anyone else. In terms of exercise, it’s kind of a catch 22. I haven’t been able to do any long distance walks or marathons since late 2014, mainly because I keep having bad exacerbations and have been more short of breath. As far as changes in the environment goes, the pollen counts in 2015 were sky high where I live. Then there’s issue of whether my asthma is actually getting worse. If that’s the case it’s another catch 22, because the more and more exacerbations I have the more it negatively impacts my lung function. The lower the lung function, the less reserve you have to deal with exacerbations.
Contributing to the high number of hospitalizations, at least partially, is a problem that many chronic asthmatics face. And that is, not knowing exactly when, or if, they should seek hospital treatment for a bad flare up. At what severity level should you go to the ER? Do you go in right away, or do you wait until you’re really struggling? If I delay or don’t go in at all, will the flare get better with just standard home care treatment? That’s the thing about an asthma exacerbation, you never know how bad it might get. And the more near fatal exacerbations you have, the more likely you are to err on the side of caution and go in early. During this last flare, had I opted to tough it out home, I would have probably died or ended up a lot sicker. In the end, it’s a total judgement call as to when to seek hospital care. All I can do is go by how I feel and by what my peak flows and O2 sats are doing, and hope I made the right decision. Sometimes I get it right, sometimes I dont. As with so many aspects of this disease, you’re damned if you do, damned if you don’t.
It’s frustrating and depressing because I do everything I can to stay healthy and prevent exacerbations. I take my medications, I avoid as many triggers as I can, I eat right, I exercise as much as I can every day and try to keep a positive outlook on things, but still I get sick. Im sure my lung function isn’t helping matters,it’s so low that even a mild flare up can throw me over the edge. And worse,because Im chronically short of breath, sometimes I don’t even realize my symptoms are getting worse. It’s all so messed up.
So anyway, faced with these increasing number of hospitalizations and the very real possibility of actually of dying during one of them, my doctors are trying to help find something…ANYTHING, that might offer help and reverse or slow this worrisome trend. We’re gonna discuss the feasibility of trying me on one of the new biologic drugs, possibly Dupilumab, which Dr Wenzel has conducted a lot of research on. The problem is that it hasn’t been approved yet by the FDA, so in order for me to receive it, they’ll have to apply for a compassionate use waiver. I have a follow up appt at the chest clinic at UCSF later this week and will hopefully learn more about what the game plan is moving forward.