Asthma

Nice try asthma, but I’m still here.

So on May 23rd, just days after proudly declaring how I had managed to keep my asthma under control and stay out of the hospital for a full 5 months, my good luck streak came crashing down and I ended up back in the hospital sicker than Ive been in a long time . (Below is the actual hospital discharge summary, which is pretty self-explanatory).

In total, I spent 13 days in the Intensive Care Unit, 8 of those on a ventilator. I picked up a ventilator associated pneumonia (VAP) and developed what they call a Metabolic Encephalopathy along with some eye problems.

I don’t remember much of the first 9 days except having horrible non-stop nightmares that I couldnt awaken from. But according to Douglas and my doctors, the sequence of hospital events goes something like this………..

Following a 12 hour effort of trying to break the attack at home, which began a day earlier, I was admitted to the hospital on May 23rd and intubated later that afternoon for status asthmaticus and impending resp failure. I was extubated 3 days later on the 26th, but after just a short time off the ventilator my ABGs started to looked terrible again, so they had to re- intubate me. I was then extubated a second time on May 29th. My ABGs the second time around remained stable, but apparently a few hours later I started getting very restless and combative and then my whole body would suddenly go completely limp. After this happened several more times, they thought I was having seizures or a stoke , so they re- intubated me yet again as a precaution and carted me over to the Neurology dept. for a complete brain work up. (Hence waking up with this glue like substance all over my head). The EEG and CT of my head came back normal, so they extubated me for a third and final time on June 1st. After this last extubation I did fine breathing wise.

Regarding the Neuro thing, the current thinking is that I might have had a reaction to the steroids or one of the sedative medications, which has happened before , but not to this degree. Fortunately, my brain issues resolved quickly once I successfully came off the ventilator the third and final time. Other than the hospital induced weakness, wobbly legs and some lingering amnesia, I seem to be doing ok now that Im home.
view from my bed

Bilateral Conjuntivitis
Last, but not least, I picked up a bacterial conjunctivitis and blephartitis in both eyes while in the ICU, for which Im still having problems. Today I had a follow up appt with an Ophthalmologist.

But it’s not just the lungs that are affected by these severe bouts, did you know that every time I go through multiple or prolonged intubations, I have to basically re-learn to walk? I don’t mean re-training for a competitive walk, I mean I loose the ability to stand up and put foot one foot in front of the other without falling over. The drugs used to keep you knocked out while on a ventilator can cause profound muscle weakness and wasting. If this goes on for more than a day or two, the problem gets compounded. Ive been out of the hospital for almost 4 days now, and can just now barely walk again without tripping over my own feet or requiring a walker. Yes, this disease can suck in more ways than the obvious ones.

So many complications, all because of a very common condition known as asthma. One thing’s for sure, after this latest attack Im starting to feel less and less invincible. Despite staying physically fit and receiving the best possible medical care, at age 63 Im beginning to wonder if nothing more than sheer luck has kept me from dying from this disease. A view which is completely different from just a year ago.

UCSF hospital discharge summary

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10 thoughts on “Nice try asthma, but I’m still here.

  1. Yikes! I have alpha one antitrypsin deficiency and my fevl/fvc is about 25%. Everytime I catch a virus I’m coughing up blood etc….Hope I just have a catastrophic event rather Thiago through what ou have!

  2. Glad you made it through. You definitely are the poster child for Asthma and all its glory. I kinda have the same (morbid) thoughts though that if something happens to me it will be this Asthma that takes me down. Let’s pray we both live into our 90’s and what happens then happens!

  3. Stephen! So sorry to read such a bad experience. I’m reading this post while i’m admitted on the hospital because of an asthma exacerbation. I’m glad, not because you and others have asthma, but because i don’t feel alone with this disease. I just hope that some day i woke up and asthma has gone away!! Praying for you Stephen!!

    Thanks!!

    Juan

    1. Dear Juan, sorry to hear this
      You are definately not alone
      .im actually in the hosp a second time this week .I hope your recovery goes well.

  4. I will be 50 in about 2 weeks, had asthma my whole life. Maybe not quite as b.c. ad as yours but it seems to be getting worse. I have not been admitted for asthma but had a few ER trips. I just went to Dr. today for more steroids. I seriously worry about my future. Will I end up on oxygen? COPD? How many years do I have left to live? What will I be able to do? God bless you for this blog, I needed to know I am not alone too. I hate living like this.

    1. Hello, Sorry to hear about your asthma. Of course everyone is different, but unless you have some other serious lung issues, chances are you wont need oxygen and will live a normal life span. While asthma can be quite debilitating, the fact is, very few people actually die from it. And those who do usually suffer severe allergic type reactions or don’t have adequate healthcare or medications available. The best thing you can do is prevent your asthma from getting worse so that you can have a decent quality of life as you grow older. Educate yourself, and seek out doctors who will work with you to stay healthy.

      And no, you are definitely not alone. There are about 200 million people on the planer who have asthma, or about 10-15% of the population. Of those, about 5% have severe asthma. So again, you’re not alone.

      I wish you the best, and thanks for writing.

      Steve G

  5. I have severe asthma and was recently hospitalized for 12 days on Iv steroids. I’ve been home for going on 3 weeks and am totally off steroids, I still get short of breath when I walk from one end of 5he house to the other. I’m 58 years old and I would think by now 8 would be seeing improvement but it seems my improvement is microscopic. For 3vey good day I have I have 3 days where all I can do is lay on the couch. Even sitting up in a chair wears me out. Is this normal? I’ve been hospitalized numerous times but never that long usually 5-7 days. At this point I feel like retiring and trying for disability. I know this is a slow process my doc said it could take weeks to months. Since I’ve had a few set backs from over doing I’m afraid to do much on days I feel better. Fitness is like a snowball though I have to start moving sometime . Suggestions?

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