eSCAping Type 1

Well, pneumonia sucks.

Having pneumonia with Ataxia sucks even more. Who knew you need a strong cough to get rid of all that junk in your lungs, otherwise you just stay sick? My weak-ass body proved that over the course of two months and two hospital stays.

You see, I got a daycare-cold from Leo one weekend, and then by Wednesday, I couldn’t breathe. Like, it felt like my throat would randomly close for a few seconds and then I’d have a panic attack and then I’d be ok, and then it’d happen all over again. I was convinced I had Covid and needed a ventilator, so my mom left work and took me to the local hospital.

True, no one likes going to the hospital. But having an incurable chronic illness kind of makes you jaded against the medical field as a whole. There’s a lot of “you’ll have to get used to that”s and “I’ve never heard of that before”s and “maybe try going to a different specialist when they have an appointment available in eight months.”

So, when the ER team ran a bunch of tests on me that yielded “no adverse results,” and wanted to send me home, I really didn’t think much of it. (“I know it feels like you can’t breathe, but your oxygen level is good, so you’re actually fine.”)

They admitted me and I assume that’s also when they began pumping me full of morphine because I don’t actually fully remember the next week of my life.

Good thing, too, since I heard it was pretty awful. Like how they were just doing “comfort care” for the first few days instead of trying any sort of medication or treatment (aka preparing me for death rather than trying anything to help me live). Or how they almost had to cut off my wedding ring when no one realized my IV vein had burst until my hand swelled enormously. Or how they brought up PT every day even though that had nothing to do with why I was there.

Turns out I had aspiration pneumonia. And Ataxia. Too bad they were focusing on the wrong one.

When I finally came to, I still had difficulty breathing but I obviously looked a lot better since I was, well, conscious. The only noticeable difference was my new G-Tube, inserted a few days ago. (Whatever I don’t like eating anyway.) So, after a 10-day stay they ended my antibiotic round early, gave me a nebulizer, and sent me home!

They probably should not have done that, since I was admitted to another hospital less than a week later.

After realizing I was in no way improving on my own, I went to a new hospital. The difference between the two was like night and day. Before even being admitted, they had taken bloodwork, performed an EKG, and taken a chest x-ray. Basically, the new hospital did more for me in 10 minutes than the other one did in days.

The CT scan they did that night showed “a dense mass of pneumonia in the lower-right lung,” the bloodwork showed a high white blood cell count, and nurses uncovered a “perpetually high heartrate.” (How’s that for “adverse results”?) They started me on antibiotics right away, tried various anxiety meds to help loosen my throat muscles so I could breathe easier, and put a Shake Vest and Cough Machine in my room to use 3x a day.

A week later I was home, a month later I’m pneumonia free. I’m still real weak and frail and tired, but at least I can finally breathe again!!

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Reasons for writing this:

– First and foremost, I need to thank everyone who donated to the GoFundMe my awesome sister set up during my first hospital stay. Because of you I was able to rent some very useful medical equipment, hire a visiting nurse, and pay off some hospital bills (psh, who needs free healthcare anyway?). 

But what honestly REALLY helped me was hearing who donated. Family, friends, grown-up students, former coworkers, high school classmates I haven’t seen in 15 years, strangers who I’ve never met but know a family member somehow… I cannot even put into words how amazing it felt to have sooooooo much support. THANK YOU from the bottom of my heart.

– Secondly, I’m hoping someone out there can learn from this horrible experience. The faster you act, the easier it is to recover; keep that in mind whenever you’re sick. Plus, I now have a lot of experience using a lot of respiratory equipment, and I currently have a G-Tube, so use me as a resource! Ask me questions! Talk to me for support! Oh, and be careful when you swallow…

– Lastly, I hope my close family members know just how great they really are, and how much I love and appreciate them. They stayed in the hospitals to help me with everything, took care of my baby boy, watched my dog, sent me care packages. All without a second thought.

 

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