Prelude to an asthma flare

So my asthma is acting up again and I feel like I have the proverbial elephant sitting on my chest. I say my asthma is acting up, but in actuality it’s always acting up, so I guess what I really mean is that my symptoms have been ramping up from my norm, getting more intense. It’s more difficult to get air in than to get it out, which tells me that what Im experiencing has more to do with bronchospasm than just air trapping. In any case, Im absolutely miserable. It’s the old trying to breath through a narrow straw kinda feeling. I haven’t been able to sleep for several days and basically feel like crap.

The trigger for this latest bout could certainly be weather related, as it’s been raining non-stop for a week and high humidity levels always sets me off. But who knows, just about anything can set me off.

Its much more than just a nag being short of breath like this, it totally sucks. Rather than getting pissed off and adding fuel to the fire by becoming overly anxious by it, Ive decided to write down my thoughts in this post. Im writing this post ad-lib while sucking on a nebulizer, so please excuse any grammar mistakes or ramblings. It’s hard to stay focused when you can’t breath.

Ive actually been flaring for several days now, so Im probably farther along into an exacerbation than I think. I know I’m actively flaring because Ive been tighter than usual, my peak flows have running 180-210 ish, which is the lower end of my yellow zone, and despite taking neb treatments every couple hours,Im not getting much relief. Upped my pred to 40mg yesterday, but just got a pounding heart from that.

I have no intended story or message to convey in this post, Im simply typing words to see what comes out and to distract myself from my labored breathing. Im doing this for myself, Im doing it as therapy, as an experiment, as a way to cope. Through the years Ive tried everything you can think of to quell my breathlessness and stay “calm” to prevent things from getting worse, so why not add writing about the situation in real-time, to that list.

The process of writing about it also buys me time. Time in the sense that, the time that it takes to compose this blog post I will have whittled that much off the duration of the flare. I say duration, because asthma flare ups don’t last forever. They may change in intensity from a merely uncomfortable stage to full on impending suffocation,but unless you die in the process, which is actually quite rare, the flare will eventually wind down and the supposedly simple act of breathing will become more tolerable again. The problem is, it’s tough to predict just how long that might take to occur, which only adds to the anxiety in the early stages of the game.

Asthma exacerbations rarely take a linear trajectory, there are always bumps along the way, and some of those bumps can get really hairy. For me, an uncomplicated mild flare can last anywhere from 1 day to 1 week and will sometimes fade away on it’s own. So in that sense, “buying time” can also mean delaying or putting off the knee jerk reaction to head to the ER right away to treat an attack that may not be worthy of an expensive medical intervention.

Well, looks like I only bought about an an hour and a half writing this post. I still feel like crap, but Im slightly less anxious about it and feel slightly less alone in dealing with it. Blogging/writing seems to be a better distraction than playing my guitar, because I can be in a lousy mood and still write, where as trying to play or learn a new piece of music during a flare requires too much concentration which I just can’t muster when I short of breath like this.

Writing this post while being very short of breath has me wondering if I should do just the opposite when Im not flaring? Maybe I should write a post about what it feels like to breath well or at least half way normal. Nah, who writes about breathing normal, what’s the point. Oh well, off to find the next breathing distraction and buy some more time.

Later that day…………

A few hours after writing that post, my symptoms became downright unbearable. The finally straw came when I noticed my sat was dropping into the 80’s. O2 desaturation is not a good sign during an asthma flare. This was the confirmation I needed that this flare was not going to turnaround on its own. Mentally preparing myself, which I always have to do when an ER visit is imminent, I got my hospital survival kit together and we headed out for the one hour and 15 minute drive to the hospital.

Final tally.. 6 days in the hospital, 4 of them in the intensive care unit, bringing this prelude to a predictable, expensive and exhaustive conclusion. Fortunately, I got in early enough that I was able to avoid intubation #35 and all the consequences that would have come with it.

My discharge face

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33 thoughts on “Prelude to an asthma flare

  1. I hope you are feeling better. I distracted myself this weekend with hopes I would make it to my pulmonologist. Didn’t work. I’m sitting in a hospital bed, fortunately off the Bi-Pap. How do you stand that? I hated it.
    I’m using music and reading to distract me so I don’t have to think about this. Have you ever just wanted to give up? You’ve been an asthmatic for so long I just can’t imagine. I’ve only had to deal with severe asthma for a year and today I hit that wall. I started to give up. I’m so tired of fighting this. Seriously Stephen how do you cope?

    I’m starting therapy next week to help me cope. Wish me luck

    1. As I was balling my eyes out after an attack Friday night like 3am my hubby reminded me the prednisone makes me NUTSO. I laughed and felt so much better after that reminder. I’s still trying to dig out of a flare since the 4th, it’s been difficult, two doctor visits, two pred shots, second round of oral and nebbing sometimes Q2 hours to get by but I am thankful it responds and I have not had to go to the hospital. I worry about when I will no longer be able to drag through the work days and will no longer have health insurance. I fight through half my work days already and I haven’t even been diagnosed a year. I know that working is making me worse, it is so taking on my body. Thank God for my online support groups and good friends. As much as I wouldn’t want one other soul to know this torture, I am glad I am not alone. You guys know what it is like.

      1. Sorry youve had a rough time . If you’re asthma ever gets to the point where it’s impossible to work, you can apply for SSD benefits. After 2 and a half years on SSD, you’ll automatically receive medicare. Hopefully your asthma will never get that bad.

      2. i am 6 days out of 3rd round of predisone and still coughing. took a week vacation to try and recover but slow going. I know about “dragging yourself” through work. i am also diabetic wich makes it interesting thanks for your thoughts getting depressed also.

  2. I hope you are feeling better. I distracted myself this weekend with hopes I would make it to my pulmonologist. Didn’t work. I’m sitting in a hospital bed, fortunately off the Bi-Pap. How do you stand that? I hated it.
    I’m using music and reading to distract me so I don’t have to think about this. Have you ever just wanted to give up? You’ve been an asthmatic for so long I just can’t imagine. I’ve only had to deal with severe asthma for a year and today I hit that wall. I started to give up. I’m so tired of fighting this. Seriously Stephen how do you cope?

    I’m starting therapy next week to help me cope. Wish me luck

  3. Sorry to hear you’re in the hospital. Shortly after I wrote this post I ended up in the hospital myself, which is where i am currently. I’m not sure how I cope with all this, but living with disease all my life probably makes it a little easier for me. But i admit there are times when i don’t want to deal with it anymore ,but then something will snap me out of that and I move on. I think it’s a good idea that you’re getting together with a counselor to talk this out with. I really think they can help. Don’t let your disease take over. It’s just a bad spell that will pass. Take care?

  4. I’m in the hospital too…first time with an intubation. I went to the walk in clinic on Monday, just thinking I needed some prednisone, but she sent me to the ER. 12 hours later, I was too tired and couldn’t handle BiPAP, even with anti-anxiety meds, so they intubated. They woke me up yesterday morning. Holding steady now, mostly just want to go home!

    1. What is a bi pap? Normally like now.. I can’t breath and can’t get my oxygen over 91 and nebulizer isn’t working so I go to dr. Dr sent me to ER er gives me 40 mg prednisone and z pack for 5 days. I think I will be ok. Never had to go into hospital except for when I had pneumonia. And they just gave me an IV and then a PICC line period obviously don’t have asthma as bad as you guys do I take derella 250 milligrams twice a day. And I use my nebulizer as needed. Currently sitting on my bed waiting for the prednisone to kick in. Oxygen 94.

  5. Reading about all of your hospitals visits, of late, makes me want to bring you all flowers. I am grateful, however, that my attach last Friday turned around. I am still on Prednisone and very tired. I am wondering if anyone has had improvement with Nucala? My Pulminologist did a full blood panel last week on me and it came back that I have a 1100 white blood count for eosinephils cells. He is submitting a pre-authorization for Nucala treatment starting in a week or two. I have had 8-10 servere attacks in 2016, up from 5-6 in 2015 and two hospital visits. I work really had to not go to the hospital but the recovery takes longer because of it. I dont know why I do that because the recovery can be brutal. Stephen, I found your blog while nebulizing my way back to breathing this week. I really admire your honesty and fortitude. You have helped me immensely. Thank you!

    1. Hello and thank you for the kind words. I know a couple people who’ve done very well on Nucula ( mepolizumab). In fact one has not had an exacerbation since starting on the drug a year ago while it was still clinical. Of course not everyone will have the same results, but it’s worth a shot. There are several more of these biologics coming out later this year.

  6. I made it home yesterday, but not sure how long I’ll be here…seems that heading back to the er is in my near future (nebs becoming more frequent and less helpful, HR too high, etc.) I hate going to the er, mostly due to experiences in having them tell me I’m not asthmatic/my asthma isn’t that bad/I’m not trying hard enough to breath. Luckily my lungs oxygenate well, so my O2 is still in the high 90s when I’m really struggling. My primary care and pulm know my type of asthma and how I sound/act/breath when I’m flaring, but apparently I don’t actually seem that sick unless you know my baseline (much higher than predicted- I’ve literally had RTs say that I was lying about my peak flow numbers. Nope, go ahead and call the allergy nurses where I get my Xolair injections, I have to do PFTs every time I go in, I consistently hit 680-700. So when I blow a 350 and can barely talk- I’m not being dramatic! I’m right on the edge of the red zone!). Sorry for the vent…I’m doing a neb and debating going in…I know that when I start debating going in, I should already be there.

    1. If the ER staff is downplaying the severity of your asthma symptoms, maybe you should go to a different hospital. You dont need that grief, it will just make your breathing worse. Or maybe contact your pulmo first to have him call ahead and explain your type of asthma to the ER staff . Oxygenation is rarely a problem in asthma unless you’re critically ill. Unfortunately , inexperienced medical people like to focus on numbers instead of the patient.

      1. Basically have 2 choices here, and my Pulm is Cleveland Clinic, so it’s easiest to go there, but I’ve been to several of the ers. It seems to be hit or miss with the staff. Today started out well, my favorite nurse was in triage- he didn’t even bother listening to my lungs, just brought me straight back to the resuscitation bay (just in case, he said) and got me on Nebs. I’m back in the icu now, icu resident is not knowledgeable, but crit care Pulm was just in and he’s good. It’s not as bad as last week, probably won’t need intubated this time, but they’re keeping an eye on me.

          1. Well, fought for nearly 2 days, but couldn’t avoid the intubation…longer one this time, and a more traumatic extubation. Apparently they had some trouble keeping me sedated. My throat hurts worse than last time (even though last time I also had strep!) and I’m much weaker, but I’m actually breathing better. Don’t even know when to hope to head home, considering that I cant make it 4 steps to the door of my room, even with my nurses help, lol.

            1. The medications they use to paralyze and keep you sedated while on the ventilator, are really tough on the body. I always feel much weaker following an intubation for asthma, than without intubation. Assuming you dont have any set backs, hopefully you’ll be out of the hospital in a matter of days. There have been times, when Ive actually gone home the day after being extubated. Take care!

            2. Last time I went home 2 days after extubation, no hope of that this time…I’m 2 days post extubation and still can’t even take 2 steps. I can stand up, but as soon as I try to move, my legs give out. The only reason I haven’t fallen is because the nurse always has a grip on me and my arms are strong enough to keep me upright with the walker.last time I actually felt stronger than I usually do after a bad flare and I thought the intubation helped by giving my body a rest rather than me fighting to breath, but this is totally different. I’m trying to keep my chin up, but it’s so hard when you want to be independent and you just can’t.

    2. As much as I hate going to the ED, I am so thankful that I have never been dismissed by ED staff. I’ve had a paramedic dismiss me but she was a bit of a tool. And another paramedic commented about my having an anxiety attack but he stopped himself apologized, and said “of course, you can’t breathe, you would be anxious, wouldn’t you”
      Honestly, why do some ED staff think we just enjoy going to the ED willy-nilly? I typically go to my primary care doc or to my pulmonologist before I go to the ED, because I always hope it will help turn things around. (Yeah, right). I can think of a thousand things I would rather do than get ABG’s drawn, multiple IV’s, bipap, and then be told I can’t get out of bed AT ALL. I would rather have a root canal! I mean, seriously.

      I am so sorry you are back in the hospital. Feel better soon.

  7. Dear Stephen, I am so very sorry for what you have to endure but have to tell you what a blessing for me to find your blog! For the FIRST time in my 70 years someone has mirrored my life and explained what is happening. NO MEDICAL PROFESSIONAL has ever helped me understand my asthma!! My pulmo started my current mess last July (2016) by requiring a PFT test that simply overstressed my airways and wound up telling me how common that is! I have just finished my third round of steroids, neb and Advair HFA plus Spiriva Respimat. He said I can no longer tolerate inhaled powders due to broncho spasms and drowning in the fountain of mucus that results from Allergic Asthma. He also said there are only 2 meds left in that formation and then there is nothing he can do for me?! We are on the verge here in Florida of pollen season so I can hardly wait. My episodes usually last 4to 6 weeks before improvement. I refuse to go to the hospital ER because rarely is an asthma attack considered an emergency although was admitted with pneumonia and asthma together. Your struggle has not given me hope but something better…the fact that I am not alone and not crazy. God bless us all who have to deal with difficulty breathing and never knowing when the next attack will hit!

  8. Hello and thank you for such a sweet comment. Im sorry you’re having to deal with all this.

    No, you are not alone, there are millions of people out there who suffer from this disease in silence.

    A severe asthma exacerbation is mostly definitely an emergency. And while it’s rare, 4,000 people still die from asthma each year in the US alone, with a disproportionate number of those people being over the age of 60. If the medical community is downplaying the severity of your disease, I would seek care elsewhere.

    Unless you have end-stage disease, dont let anyone tell you that there’s nothing left that can be done to treat your asthma. Have you had your IgE and eosinophils counts checked? These are very common blood tests for asthmatics and are usually elevated in people with allergic type asthma. If so, there are several new medications that can successfully treat this type of asthma.

    Hang in there!
    Steve Xx

  9. I’ve never had breathing problems in my life, but suddenly on Jan 31st this year I was admitted to the ICU for a severe asthma attack. I still don’t know what triggered it, but I’ve already been admitted back into the hospital once since then for the same thing. Sometimes it feels like I’m walking around an unfamiliar room with the lights out. I’m constantly in danger of bumping into something, but I don’t know where the dangers are coming from or how to avoid them. I’m praying for some answers soon, I want some semblance of a life back. I feel like 36 is too young to be fearing for my life.

    1. Sorry to hear that. The reality is, asthma can occur suddenly at any age. The good news is that with proper treatment, you should be able to live a normal life. If you haven’t already, you need a complete evaluation done by a competent pulmonologist to make sure that you indeed have asthma. There are many conditions that can mimic asthma, such as VCD ( vocal cord dysfunction), but the treatment is totally different.

  10. I have asthma I am a nurse and will never understand it. I struggle to breathe when going through an exacerbation good Sat’s good abgs am told am over breathing all time anxiety very high when you feel like an elephant sitting on chest

    1. Unfortunately your story is all too common. If I could teach anything to Doctors and Nurses who deal with asthmatics, it would be that breathlessness ( dyspnea) cannot be measured by pulse oximeters or ABGs. Normal readings just mean that you’re “clinically” stable at the moment, it doesn’t mean that you’re not suffering. Left untreated for too long your sats coould eventually drop and then you would be in real trouble.

  11. Wow all this sounded like my poor wife who fights this it seems every day. Thanks I understand it a little better. She goes to the hospital sometimes but really does not like to. When she is having a bad time, I tell her to rest, stay in bed and I’ll take care of things around the house. Her daughter is worse than she is, and lives with us.

  12. Thanks so much for your site. Here you are with all your troubles helping others! I am here recovering from an attack. I am also a nurse and no one has explained or made an action plan for me. I sorta made my own.Doctor wasn’t interested in looking at it. I have been to ER twice for chest pains. They do cardiac work up and then NEB’s. Barely helps elephant on chest and it seems it burns the lining of my lungs. Like they are sunburnt. Very painful for weeks. Follow up doctor said I had shingles. Follow up after that sent me for resp tests equal asthma diagnosis. Second severe chest pain visit, sob, they did cardiac workup which were clear and a scan. Scan found tumor. Another scan cancer. Had cancer removed. No one ever addressed why I had gone in to begin with. Only ones that were curios were nurses caring for me after surgery. I have adequate O2 SATs, feel sob, and am anxious and in pain like someone shoves something in me chest. Now I know this is a different kind of asthma attack. Normally I cough until I can’t catch my breath. Your blog has explained so much! I understand the physiology but know one has explained how that translates into what it feels like. Also I had inability to breathe first month of life. Was taken to numerous doctors. Basically mom had to hold me up for a month and not sleep. Also numerous sore throats and bronchitis episodes. Many other things I feel diagnosis missed for years. DX. In 50’s. I have cold component listed because of age of diagnosis. They prod me to say I was a smoker. But never was. I don’t even like to be around smokers, never have. Had trouble running in highschool.Doctor told me to breathe into paper bag while i ran. Sorry so long. Thanks to everyone.

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