If I had to pick just one word to describe this hospitalization, it would probably be “slow.”
I’ve definitely improved from when I got here. My airways are more open and I’m more awake, and I’m using less supplemental oxygen. But any progress has been incremental and very, very slow. At this point I’ve basically been stalled in the same place for nearly a week now. My airways are better, but still tight. I’m still congested. I’m still dependent on supplemental oxygen both at rest and with exertion. I’m also still on a high dose of steroids. I got my nurse to pull up some of my test results today, and not only has my white blood cell count remained at the same elevated level (which means I’m still battling infection), but today’s chest x-ray looked about the same as the one we took when I got here. I just don’t seem to be gaining ground.
Today I got to have a special consult with the Infectious Disease team, which I thought sounded wonderfully dramatic. It was particularly dramatic when they stood outside my door, still in the hallway, and loudly announced “We’re here from INFECTIOUS DISEASE.” So I’m pretty sure the whole unit now thinks I have the plague or something. Making friends and going places!
The purpose of the consult was to determine whether or not I could get approval for a “restricted” antibiotic. Due to the ever-increasing risk of treatment-resistant bacteria, the hospital holds a few antibiotics in reserve to only be used if nothing else works. By using these antibiotics sparingly it is hoped that they will remain effective for longer. Since I’ve been less than responsive to treatment for a few years now, with this exacerbation being particularly bad, I got the green light to get what I am officially calling Fancy Restricted Antibiotics. I got the first dose tonight, and they’re giving me up to a week to see results. If it helps, I’ll get a full 2 week course. If it doesn’t, they’ll (I imagine) whisk it back to a secret vault somewhere and lock it up tight until they can find some bacteria who actually appreciate it, and will put me back on regular antibiotics.
The big question that no one can answer is how much, if any, permanent lung damage I’ve taken this time around. It’s possible that this is my new baseline and I can’t get any better. It’s also possible that I *will* get better and am just doing so very, very slowly. Unfortunately there’s no way to predict the outcome and we just have to wait and see, possibly over the course of weeks or months. I’m trying not to be an impatient patient here, but it’s not easy.
On the plus side, now that I’m more awake, I’m more able to handle visitors. Please plan it with me though so I don’t have too many people here at once – I’m ready for a few visitors, not a party. Also, if you have ANY cold/flu/respiratory symptoms whatsoever, or have been around people who do, PLEASE keep those germs far, far away from me. If you’ve been exposed to a respiratory infection, it’s entirely possible for you to be contagious before you even start showing symptoms. I don’t even want to imagine how miserable I’d be if I caught a virus on top of the current mess.
Here’s hoping the Fancy Restricted Antibiotic ends up being my Chanukah miracle!
I’ve definitely improved from when I got here. My airways are more open and I’m more awake, and I’m using less supplemental oxygen. But any progress has been incremental and very, very slow. At this point I’ve basically been stalled in the same place for nearly a week now. My airways are better, but still tight. I’m still congested. I’m still dependent on supplemental oxygen both at rest and with exertion. I’m also still on a high dose of steroids. I got my nurse to pull up some of my test results today, and not only has my white blood cell count remained at the same elevated level (which means I’m still battling infection), but today’s chest x-ray looked about the same as the one we took when I got here. I just don’t seem to be gaining ground.
Today I got to have a special consult with the Infectious Disease team, which I thought sounded wonderfully dramatic. It was particularly dramatic when they stood outside my door, still in the hallway, and loudly announced “We’re here from INFECTIOUS DISEASE.” So I’m pretty sure the whole unit now thinks I have the plague or something. Making friends and going places!
The purpose of the consult was to determine whether or not I could get approval for a “restricted” antibiotic. Due to the ever-increasing risk of treatment-resistant bacteria, the hospital holds a few antibiotics in reserve to only be used if nothing else works. By using these antibiotics sparingly it is hoped that they will remain effective for longer. Since I’ve been less than responsive to treatment for a few years now, with this exacerbation being particularly bad, I got the green light to get what I am officially calling Fancy Restricted Antibiotics. I got the first dose tonight, and they’re giving me up to a week to see results. If it helps, I’ll get a full 2 week course. If it doesn’t, they’ll (I imagine) whisk it back to a secret vault somewhere and lock it up tight until they can find some bacteria who actually appreciate it, and will put me back on regular antibiotics.
The big question that no one can answer is how much, if any, permanent lung damage I’ve taken this time around. It’s possible that this is my new baseline and I can’t get any better. It’s also possible that I *will* get better and am just doing so very, very slowly. Unfortunately there’s no way to predict the outcome and we just have to wait and see, possibly over the course of weeks or months. I’m trying not to be an impatient patient here, but it’s not easy.
On the plus side, now that I’m more awake, I’m more able to handle visitors. Please plan it with me though so I don’t have too many people here at once – I’m ready for a few visitors, not a party. Also, if you have ANY cold/flu/respiratory symptoms whatsoever, or have been around people who do, PLEASE keep those germs far, far away from me. If you’ve been exposed to a respiratory infection, it’s entirely possible for you to be contagious before you even start showing symptoms. I don’t even want to imagine how miserable I’d be if I caught a virus on top of the current mess.
Here’s hoping the Fancy Restricted Antibiotic ends up being my Chanukah miracle!
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