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The first few days are the worst

First of all , thank you everyone! for all the nice comments. They mean a lot to me. My apologizes for the self pity thing in the previous post. I guess even us butch super hero types carry a bit of the drama queen gene.

I don’t care how many times I go through this, I always feel worse during the first 5 days following a hospital discharge. The medical establishment tends to release you as soon as there is clinical evidence that you’ve “turned the corner” , but not necessarily when you’ve started to feel better. There’s a huge difference.

Anyways, this time is no exception. Two days out of prison and I feel like hell. On top of steroid withdrawals, I picked up an horrendous cold/and or allergies ( I’m not sure which) , my lungs are still tight , and all those needle pokes I received in the hospital are finally starting to ache. Believe it or not they put IVs in my knuckles ! I have no decent veins left, so they had to use the tiny ones in my thumb and first finger knuckles. Ouch!

That bit about trying to convince some of the doctors that I was an asthmatic, was probably a result of mild hypoxia , mixed with a little hypercapnia, and some steroid induced psychosis sprinkled in. Geese, they must have thought I was some kind of a lunatic or something. Last time I was in the hospital , I felt the need to convince everyone that I was indeed a 4 time marathon finisher (that probably got a lot of laughs too). It’s amazing how a combination of IV steroids and heart -pounding, sleep depriving drugs can make you paranoid.

Each severe flare-up and subsequent hospitalization, takes a little bit more of the fight out of me. And though I sometimes complain that I will never put myself through it again, the reality is , when you can’t breath , you’ll grasp at anything you think might help. It’s probably because of my high level of physical conditioning, that I’ve been able to endure so many of these severe exacerbations. Sometimes I wonder if everything I do to try to fight this disease is really worth the hassle. But I suppose as long as the good days out number the bad, it is.

OK, time to put this latest episode to rest. All I wanna do now is get well, so I can plan my next adventure. I haven”t been outdoors in almost 2 weeks, and it’s driving me batty.

Here are a few grainy pictures I captured with my phone while in the ICU. I don’t think they’re worthy enough for a slot in my “Gross Hospital pictures ” album , but they capture the moment.

  wired out of my mind on the albuterol train   the view from my ICU bed...where''s everyone at? weird aura thing going on  Day 6, Ive actually lost my mind

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4 thoughts on “The first few days are the worst

  1. Hi Stephen!
    I am home recovering from a flu of sorts when I had the first heavy duty asthma attack I've had in years. Turns out I've been taking a cough expectorant that had a suppressant in it, too. Been so sick already, I missed that on the lable- or grabbed the wrong bottle or something. Now I'm on steroids and an inhaler and seem to be improving, so haven't walked into the ER. Could happen anyway. It's hard to stay in bed- especially since we've already been sick for a good stretch and I've got a little guy raring to go. I just really appreciate all the postings you've put up. You are reminding me why it's important to slow down and stay there right now, as well as all the medical processes and misery and things to keep in mind. This is a great blog. Thanks

  2. Hi,
    I would really like to chat via email with you and others
    I was diagnosed with severe COPD IN 2012 and eventually with asthma.
    Interestingly, the PFT(s) showed improvement; so much so that the one I had June 27th was almost normal( for COPD)
    Exactly one week later I had a severe asthmatic exacerbation and 911 was called. They did their thing: IV MEDS etc and I remained in hospital for a few hours until things got back to normal. Five days later ( this past Tuesday) the same happened only this time was worse; O2 down to 80 for a short time then bouncing all over the place in ambulance( that’s the lowest it’s gone since diagnosed with COPD)
    I heard a call into the ER saying I was ” status one”.
    I later learned that status zero meant dead so that was scary for me.
    Again I remained in the ER; this time with more nausea coughing etc
    I got out after six hours and came home.
    Now I’m at a loss as to what I should should not do feel not feel .
    I saw my pmonologist yesterday and he was vey concerned about the asthma situation ; saying how dangerous etc
    I’m on three inhalers a day ( have been for two years ),
    Breathing treatments( always use when struggling)
    He didn’t say I should do or not do anything .
    Stress and anxiety were a big part of the onset of these two attacks . My breathing isn’t back to normal but I’m doing regular things around the house .
    I get very tired after thirty minutes of anything, even riding in a car.
    Is this normal ? I wanted to drive to visit my daughter and her family forty minutes away today and my husband is adamantly against it. I feel like I’m in prison; not just because of my house but also inside my own body.
    Sorry this is so long . I just need some help to understand . I’m 54 years old and up until 2011 was one of the most active people around; full time job grand kids exercising etc. Little by little I’ve gone down but this time has really freaked me out
    Thanks

    1. Sorry to hear about all your ER trips. Im a little confused by your diagnosis of “severe COPD” Would you happen to have a copy of your PFT results? You can email them to me at breathinstephen@gmail.com

      What you’ve described sounds pretty typical for someone with COPD/Asthma , but the fact that you discharged from the hospital so quickly, tells me that this was probably more of an acute asthmatic episode. It’s very common with both diseases to feel breathless and tired for no particular reason.

      There are several good support groups out there for people with COPD Healthline.com has one. You can find them on FB as well.

      Hope you feel better soon.

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