You know that feeling you get after youve survived a really bad asthma or COPD exacerbation? One that probably put you in the hospital for several days? Where it took weeks of painstaking recovery and a slow prednisone taper, but then you finally started feeling pretty good again? You felt victorious that you beat it and you’re feeling like your old self again?
Nope, that’s not the feeling I’m talking about.
All is good again, until one day, whether it be 2 weeks or 6 months down the road, you start noticing that your breathing seems mildly labored again. It only bothers you a little bit, so you’ll just keep an eye on it, increase your meds as needed and hope that will do the trick? Nope, that not the feeling Im talking about either.
You’re now several hours into this new uncomfortable breathing pattern and your rescue inhaler isn’t really cutting it. You check your peak flows to see if they might reflect how you’re feeling. They’re a little lower, but actually not too bad, so you starting questioning yourself… What the heck is going on?
Nope, that’s not the feeling I’m talking about either.
You’re now into a full day of this nagging breathlessness. You feel uneasy and constantly tight, but not overly so. You think to yourself, “Something’s not right, am I getting sick again?
Close, but still not the”feeling” I’m talking about.
Youve now been dealing with this for a couple of days you’re getting no reprieve from ANY of your meds. Your peak flows have dropped into your yellow zone. Your O2 sats are OK, but it seems like everything you do is making you short of breath.
Nope, not it.
Then it finally hits you like a punch to the gut…… you’re flaring again! You thought maybe you got a lucky, but you didn’t. You’ve just been out-smarted by this disease…again. Your exacerbations usually come on really fast with an obvious trigger, but this time it tricked you and it came on slowly without a known cause. You say to yourself, “Why is this happening again?, I just went through this hell and have done my time. Is my life going to be turned upside down again? Am I going to end up in the hospital again? What have I done to deserve all this?
THAT’S THE FEELING I’m TALKING ABOUT!!!
God I hate that feeling more than anything in the world. It’s got to be the most depressing, defeating, stomach churning feeling there is. A feeling of impending doom. Like a dark shadow coming over you. How naive you were to think that you would never have an attack as bad as the last one, or convince yourself that youde never have to take another steroid, take another neb treatment, or have another blood gas drawn. When will you learn.
You’re on heighten alert now and getting more anxious by the minute. If you weren’t working really hard to breath before, you certainly are now. You begin following your asthma action plan, because that’s what you’re supposed to do. You’ve contacted your doctors, maxed out your meds, but still you’re huffing and puffing. You start cancelling plans and notifying friends and family just in case.
Then the exhaustive mind game begins. How bad is this going to get? How long should I tough it out before going to the Emergency Room? Should I go now before this flare gets worse? Am I a wimp if I go in too early? Will people take me seriously if my sats are above 90%? Should I stay home, self- treat the best I can and just hope that things improve? If I go to the hospital will I end up in the ICU, or worse….on a ventilator? What are my odds of me actually dying from this F’ing disease?
I don’t know about you, but this is the mental anguish I go through, or should I say…. put myself through, every time I my asthma flares and I get sick. I’m pretty sure I’m not alone.
There’s more to asthma than just fighting to breath. “THAT FEELING” is just one, of many aspects of living with severe asthma that most people are probably not aware of.
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I’m right there with you man! I liked your artistic style in this post mostly because I can relate to most of those ideas as well. I’ve never ended on a ventilator but been in the ICU a time or two. My most passionate despise of the ICU and, well, hospital trips is dealing with my meds that they never have all of. I bring my own and then fight with them on taking them.
Thanks for sharing your story as usual Stephen!
Hi Stephen,
Thanks for sharing this…
I know this feeling all a little too well… after a ‘pretty okay’ spring (and a continuous struggle of trying to get of my now way too high prednisolone tablets… grr), i was almost convinced that I can go without anything (even though my family did not really agree;-)). And here i am again.. find myself awake at nights trying to breathe… High up all the medication and still knowing I am nowhere near where I should be.
And then there’s still always the selfmanagement and self doubt part.
Due to Corona having professional contact is getting harder now. But my nurse calls me every other day but wants to keep me out of hospital for as long as she can atm… problem now is they don’t want me to nebulize even extra at home now, but don’t nebulize at all in hospital due to Corona (????). O2 is mwah but okay-ish. but can stay like that untill the real drama starts.
I was wondering: what do you do that helps? When you have this selfdoubt? Of going in or not etc?
I find myself in the same position a lot… or is it something that happens to you and that you’re just ‘aware’ of?
Thanks again for sharing!
Warm greetings,
Anneroos
Hi. Sorry to hear about you’re asthma is acting up. ( Mine is too actually). Im guessing youre from the UK?
Medical care and treatment for asthma is so much different here in the US. Most chronic or severe asthmatics have home nebulizers and are encouraged to use them before going to the hospital. As far as knowing when to go in, I usually go with my gut feeling. If Ive been sick for more then a couple days and the steroids and nebs arent working , I bite the bullet and go to the ER. Hospitals here are much different as well. Most asthmatics are rarely in the hospital for more than a week, even if they required a ventilator or intensive care. Many of my UK friends are sometimes in the hospital for a 2-3 weeks! As far as neb treatments in the hospital during Covid, the hospital I go to has special negative pressures rooms where they can give continuous albuterol nebs without fear of spreading the particles. Anyway, I hope you feel better soon. Thank you for reading my stuff Xx
Hi Mark, I had a feeling this might post might resonate with other severe asthmatics. I cant believe you have to take your own medications with you to the hospital. That’s nuts. It must add to the stress of being there. Well, at least you don’t have to worry about 6 figure hospital bills ….lol
Hi Stephen!
This is exactly what I’ve been thought since 2016. Its like I’m aware of it every day because my asthma reminds me that I need to be aware. If I don’t, she just leave me with bronchospasm slowly building up and mucus plugs and secretions coming from my lungs just like that! I have symptoms all the time everyday. Some days are better and other days are a little worse. I’m nowhere near as bad asthmatic as you but every time I have a flare I just keep going with that feeling and that question: Is this the moment to get to the ER? Last time I was admitted – June, 2019 – I just waited too much and had a very bad attacked. I thought I was gone to die. Thank God I just arrived to the ER on time and the nurses and doctors administered steroids and news just in time but I noticed it was bad because I wasn’t responding to the meds fast. It took me about a week to start feeling better.
Thanks for sharing your stories behind asthma. I found them very inspirational. I truly appreciate what you are doing!! Thank thanks and thanks again!!
Regards,
Juan
Dear Juan,
Thank you for the kind words. Im sorry to hear that you have such bad asthma. I hope you are feeling better since that last flare up. If you are having symptoms every day, I wonder if different medications might work better for you. Do you see an asthma specialist? Do you take steroid or preventative inhaler every day?
Take care my friend,
Steve
Hi Stephen
I have followed your blog for a number of years. I have AERD coupled with severe asthma. It’s a treat.
I know the feeling of going to the hospital to soon and waiting at home to long. The last time I wasn’t terrible but could feel it coming, I was given Neb treatments, I know after the 2nd one that it wasn’t enough and they would need to admit me, but they decided to try it one more time. I scared the heck out of the nursing student when she came to schevk on my and found my O2 dropping. After a frantic holler out to her lead I was off on a race down the hall, and then spent the next 5 days in the icu.
Lucky for me they have found a some new drugs that have kept me out of the hospital but make me sometimes feel like crap, and I still get the regular round of prednisone every couple of months.
But we continued to struggle on and I try not to let it stop me from doing anything.
Hello, and thanks for reading my stuff. Sorry to hear that you suffer from severe asthma, but I’m happy to hear that you don’t let it control your life. What drug did they put you on that kept you out of the hospital. Was it one of the new biologics?
Here’s to a better year in 2021!
Steve G
Hi Stephen, I’ve followed your blog on and off for years, and usually come for a read to remind myself I’m not the only one who goes through some of this stuff. Am a doctor in the UK with severe asthma (also run marathons and other crazy stuff when well) so there’s plenty of similarities. But this post hit many nails on the head! My last admission was 3 weeks ago, and was in hospital 5 times in 2020 – it’s been a particularly bad year for me… and the number of times I’ve gone round these thought cycles you’ve described sucks.
Thank you for being so honest, open and ok with sharing your vulnerability.
Hi Steve
Yes I am currently on Xolair and Nucala. They are thinking of trying dupixent.
The biologics have been a life saver.
Sometimes we have to know we aren’t alone in our struggles.
Hi all – newly diagnosed severe asthma two weeks ago – inhalers have little effect – 60 mg daily prednisone minor to moderate results after one week – i am truly bedridden because any slight exertion significantly exacerbates my baseline breathlessness. Four trips to ER already but they send me home finding nothing seriously wrong on ct scans bloodwork or O2 levels. Any drugs i should ask my dr about trying ? Thanks so much.
Just curious if the new biologics have been effective for anyone ? Thanks.
MarkLinHouston
OMG yes do I know that feeling!! THANK YOU, Stephen, so much for so perfectly putting it into words! I have just printed it out and given it to my family and friends, because so often… they just don’t get it. I am also going to give this to my doctors!
And thank you, also, for all your other fabulous, snarky, wise and informative articles! And for talking about how, YES, asthmatics CAN run marathons (sometimes). You have been a ray of sunshine that through the years has often made my own personal asthma voyage a bit lighter. And you know what? You inspired me to get off my ass and got me running! OK, walking. But walking FAST!! (ahem, sometimes!) And I continue to work out whenever the beast permits (was doing fairly well for a few years, no intubations (always a good thing!), over the past few months not so much, but my doctors here in Milan just started me on dupilumab, so I am hopeful!).
I have been following you for literally years now, as you have documented your trials and triumphs, and I thought it was about time to pop in, say hi, and to THANK YOU for everything you have done for the asthma community around the world and for me, specifically.
A huge hug from a Southern California transplant to Milan, Italy, and I will be reading your blog to see how you are doing. Stay well!
Ciao Karin,
Thank you so much for taking the time to write. Im sorry to hear that youve had problems with your asthma, but happy that youre exercising despite it.
Good luck oin the Dupilumab.
Wow, Sei Italiano? Do you have dual citizenship? Ive thought of applying for it. Ive havent been back to Italy in almost 10 years and have never been to Milano. My relatives are from Sicily ( Santa Stefano Quisqina), ma ho amici che vivono vicino a Roma, actual in a town called “Zagarolo.” So beautiful. Im half Italian, but because my blood line is through my Moms side, and because she was born way before 1948, I dont qualify for Jure Sanguinia through the consulate. I would have to apply through the courts. Very expensive and not really worth it at my age.
Stay well!, Abbracci
Stefano G