Isn’t kind of cool that no matter how big an impact a particular medical condition might have on your life, that when your attention is diverted or focused on something else, especially something that excites or engages you, that those health problems seem to take a back seat? That’s the way its been for me lately. Planning for my upcoming walking adventure in Italy has been a positive distraction from my breathing, but I know that my asthma will eventually strike again with a vengeance and knock me back into that depressing reality. As they say, it’s not a matter of if, but when. So in the meantime while I’m still relatively stable and able to critique my asthma more objectively, let me go ahead and do my annual asthma report card.
So the good news, is that 9 months into the year, I’ve(knock on wood) only had one hospitalization for asthma, and that particular flare was triggered and made worse by an RSV infection that I probably picked up in a crowded airplane. Had it not been for catching the RSV bug, there’s a good chance I might have had ZERO hospitalizations. If you’ve been following my blog for any length of time, you know that any number under 4 or 5 per year is very good for me. Of course, we’ve still got a few months to go and I don’t want to jinx it, but I’m optimistic about maintaining a low number. Interestingly, I only had one hospitalization in 2022 as well. Is this a trend, how big of a role are the biologics playing a role in this? Whatever the reason, Ill take it.
Now, while a low hospitalization count is great (for any medical condition), it doesn’t mean I’m actually feeling any better. It just means I haven’t been critically ill as often. I still experience near-constant background breathlessness along with some milder flare ups about every 4 weeks. I mentionedthis phenomena in a post 17 years ago and there’s no scientific data to back my observations, but there seems to be a predictable rhythm or frequency to asthma flare ups that come on without any noticeable triggers. The cycle is usually 6 to 8 weeks long and then it repeats. I’ll have relatively good breathing for 3-4 weeks, following by 3-4 weeks of gradually worsening breathing. This constant waxing and waning of symptoms seems to be related to varying degrees of air trapping, which my brain interprets as shortness of breath. As my lungs slowly decompress, it “feels” easier to breath again. In any case, I have yet to find a treatment regimen that has had any impact on these frustrating mini flares.
Also, No COVID. Not this year, nor any other year. Vaccines definitely work. And speaking of vaccines, I got 2 of them today, one in each arm. The Annual flu vax and the brand new RSV vax. Probably not the smartest thing to receive both vaccines the same. The combo made me feel sick with a fever and throbbing pain in my neck and shoulders for a day or so, but not as bad as the last Covid or Shingles Vax.
As far as the specifics……
Symptom wise, same ole, same ole. Im short of breath to varying degrees most of the time, but for the most part my breathlessness has been tolerable and doesn’t really bother me. My best breathing happens during the late morning and early afternoon hours and my worst is always at night. Its difficult for me to lay flat because of my neck and diaphragm issues. I need multiple neb treatments throughout the night, so getting and restorative sleep is nearly impossible. As a result, I’m chronically sleep deprived and this year it seems to be getting worse. Eventually I may have to go back on Bipap or some other kind of assisted pressure ventilation at night.
(While were on the topic of sleep, how is it that other asthmatics I sometimes interact with on social media, find it easy to sleep when they’re flaring? How can anyone sleep when they’re struggling to breath? Am I missing something? I digress)
Medications wise, I’m currently on Fasenra (for two years now), Breztri, a few allergy meds, Prednisone as a last resort only, and of course a boat load of Albuterol in the form of 4-6 neb treatments per day when Im well, and double that amount when I’m sick.
PFTs, Not a significant change overall. They go up and down, but rarely leave the 20 or 30s percentile. In other words, they still suck. Full PFTs for 2022-2023
Exercise, Of course I have to pre and post medicate, and some days are easier than others, but I still walk anywhere from 2-5 miles per day when I’m not in the Hospital. In March I completed a marathon distance at the Rome marathon in Italy.
As far as my PGS goes, my voice is still horse and breathy sounding. Sometimes my voice just disappears for no apparent reason. On the plus side, I haven’t had any noticeable inspiratory stridor and haven’t required a dilation in more than a year and a half. Im assuming that part of the reason for that, is that I’ve been intubated less frequently lately and when I am intubated they use a smaller ET tube (5.5 fr). This makes it less likely that the breathing tube will irritate my vocal cords, which is probably what started this whole stenosis thing .
For this report card, I think the biggest take away regarding my asthma in 2023…. is that I’ve actually made it to old age. Who would have thought I would make it to age 69?
Apparently not my doctors.
I remember back in 2002 at the age of 48 after suffering one of the worst asthma flares of my life (9 days on a ventilator), they gave a 50/50 chance of making it to my 50th Birthday. 5 years later I told that story to a celebrated expert in the field of severe asthma, Dr Sally Wenzel, who has actually seen the inside of my airways. She said, Steve, given the strong tenacious person you are, I wouldn’t be surprised if you made it into your 60’s,but probably not much more. Then just a couple of weeks ago during a follow up visit with one of my Pulmonologists, I was telling her about my plans about possibly doing a 400 km Pilgrimage walk in Italy. Jokingly I said to her, don’t you think its pretty amazing that I’m still a alive, let alone still doing these types of things? She kind of chuckled and said, its more like a miracle. I don’t think we’ve ever had a patient at UCSF with your kind of asthma, who has survived as many Potential NFAs as you have.
Im beginning to sense a theme here. Apparently I continue to beat the odds by living a long and relatively good life despite my lungs. Its weird, because no matter how severe my asthma is or how many times I’ve been hospitalized for it, I don’t remember ever thinking that I could actually die during an attack. I’ve definitely had some scary moments, but I’ve lived with this disease for so long, I don’t know any better. I guess I’m just of used to crappy breathing. In a crazy way, it actually startles and confuses me when my breathing is good for any length of time.
Rather than sheer luck, I think part of the reason I’m still around is because of my hatred of Prednisone. I’ve seen more people die from the long term side effects of high dose prednisone, than the disease itself. I know what you’re probably thinking, most, if not ALL asthmatics hate Prednisone, so what makes me any different? What makes me different, is that I wont take the stuff unless I absolutely have to, and then I rapidly wean off it even when told not to. After being on that drug daily from my mid teens to my early 30’s and suffering every horrible side effect imaginable, when I finally was able to wean off it I swore that no matter how sick I might get, that would never fall into the trap of staying on the drug for more than a few weeks, period…end of story! Call me non compliant or a gluten for punishment, but Id rather be a little more short of breath all the time, than to suffer the horrific side effects of that stuff.
Obviously, Im not advocating that people stop taking prednisone for their asthma, that would be irresponsible. What Im saying is that it should only be used when symptoms are severe and only for as long as absolutely needed and then look for alternatives.
So that’s basically the state of my asthma so far in 2023. Overall, Id give myself a B- , which is a slight improvement over last year.
Ok, now that I’ve finally written this asthma update, I’m going to try to once again re-focus my attention on something pleasant.