Knocked down, but not defeated

me in the hospital

arterial line

(Arterial Line)

cardiac monitor

Thanks everyone for your support and especially to Kerri and Dr Wensel for staying in close contact during my 98th hospitalization. Thanks also to ALL the wonderful nurses who took care of me..You guys are awesome! Most of all, thank you to my dear Douglas who goes through hell every time I get sick. I’m so sorry I put him through this. Yes, living with a brittle asthmatic is definitely not for wimps.

Im starting to sound like a broken record with these hospital reports, but no kidding, this flare-up was no picnic. It ranks up there as one of the worse on record for me. On a scale of 1-10, probably an 8 or 9. I was pretty sick there for a while and was starting to have doubts as to whether I was actually going to pull through it. But it seems I have more lives than all my kitty cats put together and will apparently live to do this all over again sometime the future ( I just hope it’s not the near future).
Not sure what the trigger was this time, but I’m guessing that the cold I had from the previous hospitalization never quite went away. ( walking in the rain last week probably didn’t help either)

The primary problem this time, and what usually happens when I get really sick like this, is something called CO2 retention. The act (or work) of breathing becomes so hard, that the level of CO2 in my blood climbs really high ( what they call respiratory failure). I was in failure for 4 days with PCO2s ranging from 38 to 70 (when breathing at a rate of 50, that’s not good) My lungs get so tight, that I can’t move any air…I don’t even wheeze! When you listen to my lungs ,you can’t hear any air moving.

Because of all the problems I experienced with lack of sedation while I was on the ventilator the last time, I chose not to be intubated this time ( probably a mistake,because it would have immediately lowered my Co2). Instead , we relied mostly on cont alb nebs, bipap, and steroids to reduce my CO2 indirectly. Thanks to a call put out to Dr Wenzel ( who btw, was in London England at the time), a huge increase in my steroids was ordered along with a few other strategies she recommended, seemed to set the stage for my eventual improvement. Finally on the 3rd day with the increased steroids on board, my lungs started opening up , my work of breathing decreased, and my CO2 started to fall. By day #4 my PCO2 was back to normal and I was starting to wheeze again ( a good thing) . Ironically, while all this was all going on, I found out that there was actually a world-wide shortage of propofol. So even if I chose to be intubated, they would have probably used an alternative sedative agent. Weird huh

On day # 5 I was stable enough to be transferred out of the ICU to the step down unit where I continued to improve. On day #7 I was bugging them to let me go home. On day #8 I was paroled.

This time around I thought Id do something different and post some of the good pictures instead of the bad ones. Of course, I still have to include my battle scars pics. I must have been stabbed 50 times just to gain access to 2 functional IVs and one arterial line. My arms look like black,blue and green swiss cheese and are really really sore.






Today, Im breathing a little better, though my lungs sound like a washing machine during the wash cycle. Course and wet sounding wheezes that you can hear from across the street. Again, this is a good thing and means that my lungs are opening up. The danger is not quite over, as there is a possibility that I could rebound during the next few days, but I think for the most part, I’m over the proverbial hump. In any event, I can already tell that recovering from this exacerbation is going to be slow and difficult process.

This may not come as a big shock to everyone, but these recent flares have taken such a toll on my body, that a Boston victory seems unlikely. There’s just not enough time to regain the training Ive lost. Having said that, I’m not going to let asthma stop me from doing what I love. Boston may, or may not happen. We’ll just have to wait and see.

Just one final thought…..Though I may look happy in the pictures above, it was all for the camera. I’m a ham, no doubt, but I’m also human. These recent exacerbations( 3 hospitalizations in 3 months) have left me incredibly frustrated and down on myself. Steroid induced or not, right now I’m in a pretty deep depression that I’m not sure how long will take to climb out of. I’m not really sure that I even wanna continue blogging about my disease. I hate to be selfish, but lately, just the word “asthma” or the thoughts it provokes, make me wanna run and hide. If I seem slow to respond or update, please bare with me. Thank you everyone for being such good friends. We have built a huge community around our disease and are getting the word out. You should all be very proud.

Postscript 2-7-2010; I had no idea I would strike such a chord with my friends over my comment about not wanting to blog about my asthma anymore.
Don’t worry, I will definitely continue to blog and post on asthma support sites. Maybe not as often , and maybe not focusing as much on my own asthma, but I will definitely keep everyone up to date on what’s happening in my crazy world. I’m just really burnt out right now and I need to focus my attention on things other than my own breathing. Ive been blogging about my asthma and my declining health for 5 continuous years now. I don’t want to be one of those people who chronicles their own death(as noble as that may be). I need to start paying more homage to my idol, the King of the ballad , Mr Manilow. (I haven’t even seen his new show at the Paris Vegas yet.)
So NO worries…. I’m not going away, my life is way too fascinating to keep all to myself :-)

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12 Comments Post a Comment
  1. Danielle says:

    First – I'm so sorry, you've really been through hell and it's about the shittiest thing ever. I'm really sorry.

    Second – I know you were hamming it up big time, but the pics are really gorgeous. Especially the one of you and Douglas. Kerri's right, your eyes are epically blue.

    If you stopped blogging about asthma, you would be terribly missed, but it would still be ok. You need to do what's right for you. The only piece of advice my dad ever gives me is "make decisions that are right for you, only then can they be right for the people around you". I hope you will do that, whatever you end up doing about blogging.

    Sending major love from Canada.

    Danielle oxoxoxoxo

  2. Tammy says:

    sending hugs your way – I am so sorry for the crap you have to go through – we all care about you and know you will get through this!!!!!

  3. kerri says:

    Hey Mr. Blue Eyes,
    (See, D agrees with me about your gorgeous blue eyes. :) .)

    I understand completely about your thoughts on the blogging thing, and agree with Danielle on that, too, especially in regard to her dad's advice. We'd miss you A LOT, but, you have to do what's right for you.

    Lots of love and hugs, Steve. (Hopefully we can Skype or something soon)
    <3

  4. Natasha says:

    Big Big BIG HUGS to you and Douglas.

    Natasha.

  5. GayleMyrna says:

    Hi Stephen:
    Glad you are mending. RE: blogging, etc. Do what's right for you! With that being said, I do appreciate your blog…but your well-being takes first priority.
    Cheers!
    GayleMyrna

  6. Sus says:

    Yeah, mate…lots of hugs coming from London.
    And I agree with the others-you gotta do whats right for you and think about number one.
    But I hope you don't stop writing-your body needs a break from all the asthma crap, even the written stuff.
    You're very loved!

    Sus xx

    PS-I was rather excited to learn your DR W was in London this week-I'm wondering if she was meeting with the asthma bods at my hospital. Could bet my bottom dollar-going to ask them next time I talk to them! Sx

    • To Everyone: THANKS FOR YOUR SUPPORT ! You’ll never know how much I appreciate it. Don’t worry, I will definitely continue to blog. Maybe not as often , and maybe not focusing as much on my own asthma, but I will definitely keep everyone up to date on what’s happening in my crazy world. I’m just really burnt out right now and I need to focus my attention on things that make me happy. Ive been blogging about my asthma and my declining health for 5 continuous years now. I don’t want to be one of those people who chronicles their own death.( though I guess we’re all doing that in some way).
      So NO worries…. I’m not going a way. Just reinventing myself a little.

  7. kerri says:

    Amen to your post script :) .
    I LOVE this part especially "my life is way too fascinating to keep all to myself". :D Right on!
    I mean, where else would I have found a video of a cat drinking out of a sink or learned about the art of towel rolling? I am pretty sure nowhere.

    Love ya, Steve!

  8. Becca says:

    Lots of hugs and thoughts coming your way. I don't tend to comment on your blog a lot- other people usually say what I want to a lot more eloquently than I could, but felt I had to comment this time. Take care and hope things start to pick up for you very soon
    Becca xx

  9. Fran says:

    sorry to hear about the slammer again. Too bad to hear about Boston also, but I completely understand if that's the choice you end up making.

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Today, Friday July 30th, 2010

Broke my own rule and walked when I was in my yellow zone. Walked 8 miles yesterday, and now I'm paying for it with crappy peak flows and increased dyspnea. I just wanted to try my new shoes out. When will I learn. Taking 2 days off from walking.

FEV1:39% O2 SAT: ⇩ 96% Peak Flows:⇧ 80%

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