Arterial Blood gasesAsthmaAsthma hospitalizationBipapBronchiolitis ObliteransIntubationOther medical problemsSecondary conditionsSevere asthmaVentilator

133rd hospitalization for asthma and 1st one for Bronchiolitis Obliterans

My 133rd hospitalization occurred on 10-9-2017. The trigger wasn’t the usual environmental allergies or resp infection, this time it was smoke from wildfires that have been devastating portions of northern California the past couple weeks.

I woke that morning (4am) to a house full of smoke . It was so bad, we had to put towels and masking tape around all the doors windows and vents, to minimize the odor. We basically shut off the peripheral rooms of the house and huddled in the center living room till we could find out was happening on TV. Turns out the fire was 20 miles north, but strong off shore winds were blowing the smoke directly at us.

Ive never been in a situation like this where the smell of smoke from wild fires was so strong and wasn’t even sure how long Id been exposed since I was asleep when the smoke alarms in the house went off. At first I was more concerned about the well being of my outdoor pets, but as the hours went by my own breathing started to get really bad. At one point we got in the car just to drive around with the AC turned on for some relief, but the entire bay area was smoky and driving around would only cause more pollution. So we just went to the store and came back home.

By 10 am my peak flows had dropped below 160 ( my baseline is 280) and I was doing neb treatments every 30 minutes to get them back up. It was then that I was actually getting worried that the smoke was making me sick. Because UCSF can be a 2 hour drive during commute hours, we had to make a decision quickly on whether or not to go to that hospital right away or wait till the evening. I told Doug, lets just get this over with, the longer I wait, the sicker I’ll get.

Arriving at UCSF at around noon, the ER and most of the hospital reeked of smoke. There was a lot of media reporting how bad these fires were and some of the medical staff were actually wearing N95 masks. Thankfully the upper floors where the ICUs are located were much better, and being on BIPAP and then a ventilator I didnt smell anything. But even 7 days later you could smell the smoke on the lower floors. It was awful.

My treatment went the way it always does. They stabilized me in the ER with the usual magnesium &steroid bolus, bipap, cont nebs and supplemental oxygen. They even went as far as checking my vocal cords during the peak of the exacerbation in the ER to check for any VCD which they did not find. Then about 5 hours later they transferred me to the 13th floor ICU. There they did all the preemptive stuff like put an Arterial line in for easier access to frequent blood gas draws. Below are my ABG results for the first 36 hours. We also discussed intubation parameters should it get to that point. A couple hours later it did get to that point ( you can see the corresponding rise of CO2 on my ABGs) and below is the actual handwritten drug list and sequence they used during the intubation. I have a notorious history of walking up paralyzed during intubation and then suffering ICU delirium as a result, so this thoughtful anesthesia recipe was much appreciated. I hope I thanked the doctor who intubated me, because her drug cocktail really worked.







I remained in an induced coma on the ventilator for 2 days, but had some weird nightmares when I awoke and was extubated .This apparently caused me some anxiety, which then compelled me to pull out both my arterial and venous access catheters ( you should see my partner’s shirt). The mental stuff quickly resolved and I was starting to breath better as well.

On day 3 I was alert enough to sign the consent forms my pulmonologist brought to me for the experimental drug Ive been waiting nearly a year to receive, so that was welcome news.







On day 4 I was well enough to transferred out of the unit. I finished the rest of my hospital stay on a regular medical floor receiving just the standard Q4 hour breathing treatments and steroid taper. On day #8 I was begging to go home and they obliged.


But this post isn’t really about a smoke triggered exacerbation, what made this hospitalization different is that for the first time I was being treated not only for asthma, but to a lessor degree for constrictive bronchiolitis obliterans( CBO for short). This is kind of a big deal because they’ve suspected for quite sometime now that I might have CBO, but this is the first hospitalization where the medical team actually discussed and documented the condition in my chart. And while the treatment for asthma and CBO is pretty much the same, the pathology of the diseases is completely different, as are the long term outcomes. In a nutshell, asthma usually gets better, bronchiolitis obliterans doesn’t. With CBO it’s more a matter of management and expectations than of full recovery.
The ultimate diagnosis of BO will come after they do an open lung biospy, but that procedure carries a lot of risk, and given that my lung function isn’t so great, I doubt they’ll do it. Even without biopsies, I meet the clinical criteria for CBO, so they’re treating me accordingly.

When it was first mentioned that I might have this condition, I was in total disbelief, after all, why did it take so long to figure this out. I don’t really know the answer to that, but what I can tell you is that I actually have a sense of relief now knowing that there is an identifiable cause for why my asthma doesn’t behave the way it should.

Lets be clear here, I STILL HAVE ASTHMA, Ive had it my entire life and it gets pretty bad at times, but it’s also pretty well controlled with steroids. What’s not controlled is the bronchiolitis obliterans, and it is this condition and not typical asthma, which seems to being causing most of my severe exacerbations, hospitalizations and outright suffering.

Will this new diagnosis change the way Im treated medically?…probably not. Like I mentioned earlier, with the possible exception of long term antibiotics, which I’m now taking, the treatment for CBO is pretty much the same as asthma or other obstructive diseases. Having said that, it’s been my experience that the medical community doesn’t like to confuse the issue or muddy the waters so to speak when they’re treating a patient with multiple lung conditions, especially when those conditions have similar symptoms. Everyone’s heard of asthma, very few have heard of CBO. It’s for that reason I’ll probably always be labeled primarily as an asthmatic, even though my other condition is causing most of the problems.

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4 thoughts on “133rd hospitalization for asthma and 1st one for Bronchiolitis Obliterans

  1. I’m so sorry to read about CBO and all of thi suffering your going thru. I have asthma and i’m on Symbicort 160/4.5, Singulair 10MG, Ventolin and Spiriva. Sometimes my asthma is so bad that i need oral steroids; about 20MG each day. But even with my bad simtoms, i can’t imagine haw bad you’ve been feeling. May GOD heal your lungs brother! Thank you for sharing this.

  2. I am so sorry you had another episode-they get disheartening the more you have them. I am also back in the ER hoping to do further tests as I am not getting better. I hope the next few tests help and I can get admitted and figure out why I am not getting better. I will update once I get more information. Back on Prednisone 50mg for the next week +. Wishing you a speedy recovery.

  3. Stephen,

    So sorry to hear about your recent hospitalization, but am glad they finally confirmed the CBO. Sometimes it’s harder not knowing exactly why symptoms recur. And glad that the steroids are giving you some relief with your lifelong asthma. I say all this as an asthmatic since I was an infant (and I’m now 62, usual FEV1’s between 55 and 60).

    Just know that so many of us are rooting for your!!

    1. Hello, and thank you for your kind words.

      Next week I’ll be starting bi- weekly injections of an experimental called dupilumab. Im receiving it on a compassionate use basis from the drug maker Sanofi. Not expecting a miracle, but if it helps reduce my asthma exacerbations , even a little, that would be so awesome.

      I’m sorry to hear that you’ve had asthma for so long, hopefully you’re not letting it slow you down too much. If this new drug works on me it might work on you as well.

      Steve

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