A lot of attention is focused on what goes on during a severe asthma exacerbation, but very little about what occurs after. What a lot of people ( and even some physicians ) don’t often realize, is that once the initial asthma crisis is over, the party has only just begun. There’s a perception that once you get past the acute phase of an asthma exacerbation, that your breathing rapidly returns to normal and everything is fine again. Well, that may be true in a very small percentage of asthmatics, but for most severe asthmatics like myself, the reality is much different. No matter how many of these severe exacerbations I go through, (and believe me, Ive been through a lot of them), it’s always the post hospital recovery period that’s the most difficult for me.
When you suffer an asthma attack that is severe enough to warrant hospitalization, once that critical acute phase is over , there’s also a recovery phase that you have to contend with. Though maybe not as scary or dramatic, can nevertheless make one feel just as miserable as the initial attack and can last 10 times as long!
You just don’t walk out of the hospital after a bad exacerbation and go about your business as if nothing ever happening. A sbad asthma exacerbation and all the medications and interventions used to treat it, can reek all kinds of other havoc on your body, leaving you weak and breathless for days and weeks after the initial assault. There’s also an accumulative effect, whereby each subsequent exacerbation takes that much longer to recover from. The recovery phase almost always is a bumpy one. There will be days when you feel like you’re starting to breathing better, only to be cancelled out by a string of really bad days. And it’s not just a physical recovery, steroids can really mess with your head making your feel like superman one day, and a sobbing emotional wreck the next. I remember times when I fell into periods of deep depression. My breathing was back to normal again, but I was so depressed I actually contemplated suicide to escape it. As soon as I came off the prednisone, I was fine.
The length and severity of this recovery phase varies for everybody. For me, it’s usually determined by how severe the initial attack was, how many days I spent in the hospital, whether or not I was on a ventilator, and how many steroids they had me on at the time of discharge. Generally, the longer the hospitalization and the higher the steroid dose, the longer it will take me to fully recover. Age and overall health play a big role as well I’m sure, but in general it takes anywhere from 3-6 weeks to get back to semi normal.
Dont get me wrong, Im grateful for the medical care I receive when Im in the hospital, but if you think about it, all they really do for you in the hospital, is stabilize you enough so that hopefully you won’t die. There’s no actual concern about “how you’re feeling” as long as your numbers are survivable. Once you’re over the hump clinically, you’re booted out and basically left to fend for yourself. There are no Nurses, Doctors or Respiratory Therapists to hold your hands or monitor your progress after you leave the hospital (unless of course, you live with one). At best, you might have a follow-up a appointment with your doctor a couple weeks down the road , but by then you’ll probably be back to normal ,which kind of negates the whole purpose of such an appointment.
Maybe I’m asking too much, but I really think its important to have some kind of ” immediate” post hospital follow-up care or monitoring for severe asthmatics. Even a series of phone calls during the first week following discharge to see how you’re doing would help. Not an automated call from a computer, but from a real person.
I’m not slamming any particular health organization or hospital for the lack of follow up care options for severe asthmatics, I’m just trying to bring attention to the fact, that there is often a prolonged and difficult recovery phase following an asthma hospitalization.I know this first hand, not just because Ive been through it, but most of the mail I receive on this blog are from people dealing with this issue.
Finally, and maybe Im unique in this regard, but one thing Ive learned over the years, is that the faster you can get back to your normal routine, the faster you’ll recover. By that I mean, it’s important that you NOT stay in bed and rest too much..it will only make you weaker. I know it sounds contradictory to everything you’ve heard, but you really need to start thinking like a non-sick person again. Take baby steps at first and don’t over it, but don’t stop all physical activity just because makes you a little short of breath or you’re afraid that it might re-trigger your symptoms all over again. Your body is not going to rehab itself, you need to help it out. Just be smart about it.
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This gets me too, people really don't understand what we go through to get back to "normal" after a severe exacerbation. Once the visible panic stage is over, it's easy for outsiders to forget what we are up against. Luckily I haven't had to climb that mountain in awhile now. I'm really rooting for a smooth recovery from here on in!
Danielle
I think this happens in a lot of situations. I don't know about the United States, but here in Canada the system is so bogged down in every area, it's all workers can do to just keep people alive. Don't get me wrong..I am thankful every day for our "godless communist healthcare" but people aren't making the connection between good follow-up and better long-term outcomes. I also know another part of it is that here, doctors don't get paid unless they physically see you…so phone calls are out of the question. I recently had to drive five hours both ways to have a doctor read my mri and bone scan for 2 minutes.
This post also reminded me….what do you think about allotment of resources for swine flu? There has already been talk that there are just not enough ventilators and ecmo for those that will need them.. Do you think that having asthma will be a point against us versus a young healthy-but-sick with h1n1?
Well written, Steve. By all accounts let those who ought to see this see it-your Team, physios, shrinks, you name it. I always think that we get patched up enough to abort or fix the certain crisis scenario, then are discharged to start the rocky real recovery. From personal experience the length of time spent in a hospital bed prolongs the length of the recovery at home, so coupled with the fact that if you've been pretty darn sick whilst you were in that hospital bed, then you're looking at a pretty uphill recovery patch.
It's a whole other 'kettle of fish' , isn't it, and one a lot of the medical bods don't really know about. It tends to be those closest to me who pick up the pieces at home following a difficult admission, plus my local GP.
Oh yes, your US style discharge notes are far above what we get given here-there have been plenty of times that J and I have had to try and remember what happened to me during the course of an admission, drugs, IVs tubes you name it-this is something the UK is currently trying to rectify!
Gentle healing hugs,
Sus xx
Hi: Glad you are on the recovery road. Though I have had numerous ER, Urgent Care, same day doctor visits, etc., etc. due to the multiple exacerbations I've experienced, I've only had two hospital stays (I am adult-onset, with my condition worsened since 03). I am fortunate that my current family practice doctor of last 3 plus years has been very diligent on following up on me with multiple visits during my l-o-n-g recovery periods of time. Yes, you are absolutely right that once the initial acute phase of the attack has been dealt with (in my case, with lots and lots of prednisone, IV steriods, IV antibiotics, nebs, oral antibiotics, etc, etc.) there is a prolonged recovery period. In my case, inbetween exacerbations (and mine usually involve bacterial bronchitis) I still have dypsnea with walking faster than a strolling pace, and irritant hypersensitivity, etc….but at least I can function pretty well. I am currently at my "baseline", so optimistic, but vigilant. Take good care of yourself and keep on keeping on!
GayleMyrna
hi stephen. Im glad your out of hospital and on the road to recovery. reading you post I can relate to it so much and you are so right. there is not much after care once you ahve had the attack and got stable. as you say drs jsut look at your numbers but dont actually know how you are doing. its not only physically draining but also psychologically as well. I am lucky that I ahve a great psychlogist who works with me now for after attack and works with me to make sure i pace myself and not go back to things too quickly. i find that the worse the attack the worse the recovery and the more frsutrating it is. i think the more attacks i ahve the longer it takes to recover jsut with more damage that is being done.
take care and hope your recovery goes smoothly
olive x
Hi. I found your post through some random googling. Although I've had asthma all my life, I haven't had a severe attack since I was a child. I had one recently that I needed to go to the ER for treatment. It was scary stuff. However, what shocked me was my slow recovery time. I was absolutely zapped of all energy for days. Moving on the couch exhausted me. Stairs and steps still leave my heart thumping and me breathless. My peak flow is still down. Despite the plethora of information available for dealing with an asthma attack, or controlling asmtha, there is very little about the aftereffects of such an attack. I was worried that I should have been bounching back alot quicker, and eventually phoned my doctor.
I appreciate your post, and knowing that this is a pain for other people too 🙂
THanks for the comments. Sorry you’re having such a rough recovery. Don’t you just love this disease.! Are you a severe asthmatic? You should contact Sally Wenzel at the University of Pittsburgh . She’s looking for severe asthmatics for research. They’re doing some fascinating stuff there. She’s an awesome doctor who can totally related to the hell we go through.
Breath easy!
Hi,
I just wanted to write to say thanks for posting this blog. 4 weeks ago I was hospitalised for the first time with my asthma (I’ve had it for 28 years). I had a severe attack linked to an infection (high fever etc…). I left hospital after 1.5 days and rested at home for nearly two weeks before I felt well enough to get outside. I am still struggling after 4 weeks, but had a follow up with my doctor yesterday and all the signs are I’m getting better, but it will be at least another month before I’m back to normal. I’m now back at work, and everyone thinks I’m okay.
Your blog has been a great help, as there is nothing written about the recovery stage. Thanks, Kim
Hi Kim,
Thank you for the kind words.
Im glad to hear that you are starting to feel better. Most people don’t realize how debilitating a severe asthma flare can be, unless they’ve experienced one.
Oh thank you for this so much! I have been struggling with asthma for many years now. I just recently had the worst attack of my life. That ended up with me passing out, seizures, in respiratory failure, intubated, unconscious for 2 days, in the ICU for 3 days and hospital for 5. The hospital was not the worst part! It’s been the almost 3 weeks now sense!! My throat was so sore I would cry! I couldn’t sleep, could hardly still breath, terrible pain everywhere, zero energy. And I was wondering if this is normal! I have been looking for a similar story to tell me this is something others go through and that I will get past it! It is daily getting better, but oh so difficult. Days with energy and the next none. Thank you for sharing.
Sorry to hear you’re having such a rough time. Unfortunately, what you’re going through is pretty typical after a bad exacerbation, though it is a little unusual for you throat to be sore for that long. Sometimes it can take weeks and even months to start feeling normal again. When you’re on a lot steroids and you start weaning off, the anti inflammatory properties of the drug wear off as well, leaving your muscles and joints aching. This usually gets better once your body starts making it’s own steroids again. Right now it probably seems like you’ll never get better, but you will. Hang in there.
After a asthma attack is it normal to have large bruises on inner thighs and legs I was assured no injury’s happened also feel so tried ?? I’m wheezy on nights n got a cough. Sore throat due to a cold I cannot shift .thank you Janet
Hello, No, it is not normal to have ANY bruises on your body except from IVs or ABGs. It’s possible that if they drew and ABG from your femoral artery ( which is rarely done) you could have a bruise on your inner thigh.