Once again Im way behind on my blogging, this time because I just haven’t been in the mood to write or talk about anything even vaguely related to asthma or hospitals. My last hospitalization a couple months back, continues to f-ck me up….mostly in the head.
Other than the usual prednisone induced insomnia and resulting fatigue and muscle cramps, physically I recovered from that exacerbation and hospitalization fairly quick. It only took me 4 days after my discharge to gain enough strength in my leg muscles to walk again unassisted.
Muscle weakness and muscle wasting occurs really fast when you’re immobile on a ventilator. But, in less than a week I was back up to my daily 1.5 mile morning walk, and a week after that I was back to doing both my morning and afternoon loops as well.
The asthma/hospital recovery process this time around has been more emotional than anything else. ICU induced psychosis, which in my case is thought to be brought on by a combination of potent medications and spending time on a ventilator in the ICU, can apparently mess with you long after you leave the hospital, or for that matter, long after your breathing gets back to baseline. Though this certainly wasnt my first rodeo, the mental drain from this last hospitalization has been notable.
But its not just the lingering side effects of ICU delirium or feeling like your body has been put through the ringer, it’s the frustration of living with a disease that never seems to let up. Its always throwing something new at you, and usually when you least expect it. Forget the never ending cycle of flare-ups, hospitalizations and painstaking recoveries, its also the endless doctor visits, lab appointments and a million other constant reminders that your life is dictated by a ruthless and invisible enemy. Its the realization that no matter how positive your attitude is, or how hard you work at staying healthy, that this vicious cycle will only continue and that you will probably never experience an appreciable block of time in which you are 100% symptom free. That your struggle with this disease will last till the day you die. Its all these negative thoughts and that cant be good.
Going on 10 weeks, I figured that the post hospital depression I was experiencing was yet another gift from this lovely disease and that it might actually become my new reality. Thankfully, through my weekly meetings with a very skilled and compassionate Psychologist who specializes in chronic illness, Im starting to discover new tools to get past this feeling of hopelessness. Im also finding out that cognitive behavioral strategies, such as mindfulness, can really help in reducing the stress and anxiety associated with severe asthma exacerbations by changing the way you look at them. I hope to use some the stuff Ive learned during future flare ups and perhaps quell some of the hidden anxiety that could be fueling my exacerbations in the first place. In the meantime, Im using those techniques to help calm the everyday stresses of living in this Covid world and the politically charged environment that surrounds us.
What makes this whole situation worse of course, is the Covid 19 pandemic. When you’ve finally recovered from a really severe asthma exacerbation and/or hospitalization and your breathing is finally better, you cant take advantage of those good breathing days by going out and doing something fun like traveling long distance , visiting friends or family, shopping, taking in a concert or a movie, or basically anything in a public space. That said, I think maintaining some kind of daily routine and a sense of purpose is important during times like this, whether you’re suffering from a chronic illness or not. To maintain some normality and my admittedly my sanity, I’ve been doing a lot of attention-diverting activities that don’t require tons of brain power, but that are still enjoyable. Things like playing the guitar or doing more frequent and longer distance fitness walks. These were hobbies long before the pandemic came along, but they are important to me more than ever now. My relief valves if you will.
My Pulmonologist, who has actually spent more time with me while I was zonked out on ventilator in the hospital, than as an outpatient in his office, is obviously concerned and frustrated by what’s been happening as well. During my last follow up visit with him on Zoom, I could tell he was reluctant to convey that there wasn’t much new out there that he could offer, but thanked me for giving the Palliative care folks a try. While it probably wont lesson the burden of my disease, anything that can help lessen the psychological impact of these exacerbations and improve my quality of life is certainly worthwhile. He did however urge me to look into some biologic drugs that were in the pipeline and that might actually help with my type of asthma phenotype (Type 2-low). One that is catching a lot of attention right now is the Anti-TSLP drug Tezepelumab. The outcomes looked promising in the phase 2 trials. If you’ve never heard the term TSLP ( Thymic Stromal Lymphopoietin) , here’s a video that shows its role of in asthma exacerbations.
Moving forward into the new year (2021), my focus will be on avoiding intubations if at all possible. It would be wonderful if I could avoid hospitals all together, but that’s not very realistic or wise, as the trajectory of a bad asthma exacerbation is very hard to predict. Asthma is really good at fooling its victims on just how bad a flare might get. I will however, lower the bar considerably on when I think its time to seek help and head to the ER. Rather than procrastinate and wait several days to begin oral steroid therapy once I begin feeling crappy, I will start them much sooner. Not sure if this strategy will work, but it might buy me a little more time. Sometimes an extra day or two can make all the difference in getting over the hump and avoiding a problematic hospitalization. We’ll see.