When it's bad, it's bad...

I grew up with a family history of asthma, but didn't develop it myself until I was 21, after my roommate started a small kitchen fire and I dealt with smoke and chemical (dry powder fire extinguisher) inhalation that night. I'm now 27 and have been hospitalized 8 times with asthma, including 5 ICU stays and 2 intubations. After the intubations (both within 2 weeks), I developed steroid Myopaythy, which caused severe weakness in my legs and I spent 6 months relearning how to walk. After that, my pulmonologist decided that we need to avoid systemic steroids in my treatment. Since we know I'm susceptible to myopathy, the concern is that the weakness would affect my diaphragm and they wouldn't be able to get me off a ventilator. Steroids are a last resort if I'm in an extended attack. So now we can only use inhaled steroids, magnesium, and epinephrine when I have an attack. I've been in the ICU twice since the intubations. The doctors say it's a matter of when, not if, I end up back there again.

Based on that first paragraph, you're probably thinking I have very severe asthma and experience symptoms constantly. Nope. When I'm healthy, I present as a mild, intermittent asthmatic. My pulmonary function tests show that my peak flow is 150% of normal, diffusion is 130% of normal...basically, they say that my lungs are in tip top shape! I can go months without using my rescue medication. And then there are the times when I go into a 4 month long exacerbation and experience a significantly diminished capacity as shown by my PFTs. Or, I can get sick and go from being at work (though miserable!) to being rushed to the ICU in respiratory failure in under 12 hours. Basically, I don't fit in the typical asthma box.

Because of that, I have sometimes struggled to be taken seriously when I have an attack bad enough to send me to the ER. My oxygen doesn't drop until I'm in impending respiratory failure. I don't wheeze, my breath sounds go nearly silent. I've had nurses tell me that I'm just not trying hard enough to breath. I've been sent home only to have to call 911 within a few hours. Sometimes, it's just that they're going by the numbers, and when I'm blowing a 320 into a peak flow meter, the norm charts say that's close to 80% of normals, so they're not too concerned... But my normal is 700. That 320 is under 50% for me. It's really hard to fight when you can't breath, so now I have everything written down in an emergency app on my phone. And I have a video of me using my peak flow meter, in hopes that they'll actually believe me.

I wound up in the ER yesterday, following a set of PFTs...I went from talking nonstop with the tech to barely getting out 1 word utterances in less than 15 minutes. Luckily, the doctor and 2 nurses in the ER recognized me immediately from my last visit (from which I was admitted to the ICU) and I was getting meds within 3 minutes of the tech bringing me into the ER. It was good to just be able to be treated.


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