the days
“What a strange world, we trade our days for things.”
― Atticus Poetry
I’d rather trade my things for days.
Everyone is claiming that this new CF drug, Trikafta, will give me more days. I’m more reluctant to believe (as usual).
Here’s the skinny on how this new drug is supposed to work. Cystic Fibrosis is caused by a mutation in the DNA cells. This new drug is working to fix those mutated cells. It’s targeting the source, not the effects. There is no other drug like it on the market currently. This is all brand new technology.
A doctor once explained it to me like this: People with CF create too much salt in their systems, and not enough water to thin it out, therefore creating a thick mucus everywhere (mostly our lungs, but other organs are affected as well). Let’s think of that as a sprinkler system. My sprinkler system is shut off. Nothing is getting “watered” properly in my body, and the mucus continues to grow. This new drug is essentially trying to “turn on” the sprinkler system. By targeting the system itself, it is setting out to thin the mucus, which is what causes so many lung infections and problems in our bodies. This, in theory, will give me a longer life span.
Fast forward 20 days into taking this new drug, and I land myself in the hospital with pneumonia and a cold. Not ideal. So, all in all, not feeling great. 7 days in the hospital with only one day of sunlight in between (see above picture). Lots of thoughts can set in during this time, I’ll let you use your own mind to create those in your own head, no sense in letting mine out. I’m out of the hospital now and at home doing home IV’s for another week. During this time I have missed out on many things, December things, like singing at my Christmas concerts with my choir, and going to a Christmas party, or watching the movie Elf in the park.
Then I think, maybe I would trade days for things. Depends on the things I suppose.
Also depends on the days.
At least this beats last year, when I was stuck in the hospital over New Years. I also haven’t been in the hospital since then, so all of this paragraph is good news.
Anyways, I don’t really have a proper ending for this blog. So instead, here’s Thomas Edison’s last words:
“It’s very beautiful over there.”
—memento mori
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