I slipped out on a bitterly cold evening last month just after I last wrote to attend a ceremony for my youngest grandson as he "bridged" from Cub to Boy Scouts. It was single-digits outside and though it's only 15 feet from the front door to my side of the truck when she pulls in to get me, I got a couple of lung fulls of very cold air that made them ache like they hadn't in ages and for longer than they ever had. Usually the pain subsides in 10 minutes or so; this time it was over a half hour before the ache let go and my O2 saturation percent came back up to 98%.
A few hours later, leaving my son's from the "after" festivities, it was the same thing. When I screw up and make them ache that way it usually takes a few days for the "tired" and the "ache" to let go. This time, not only did it not want to let go, but all of a sudden the machine settings that used to maintain me wouldn't: I needed higher settings, more oxygen, more bottles across the board. I had been showering with 3 oxygen lines; it turned into an almost impossible struggle...
I ended up back on antibiotics as well, because I picked up something that night, but even when they and the steroids started to work, things didn't improve. I figured out management strategies to "get by", sometimes not being able to charge the refillable bottles, using my portable in addition to the house machine during the day.
I saw the heart doctor a week after this began and he explained that when your lungs hit cold air they choke off the bloodflow so you don't lose all your body heat; when your lungs are already compromised, you can't give up any bloodflow because you're already not getting enough oxygen. That made sense; he said it's usually a problem for cold weather joggers and runners.
The same week I saw him the "miracle drug" showed up and I started on it.
4 weeks into it a fever kicked up again; I'd already discussed with the pulmonologist the cautions that were packaged with the new drug about it being a blood thinner and that you should avoid other drugs that are and was told that I needed to do what I need to to control the fever. That worked for a few days; the fever went away with doses of tylenol, aspirin and ibuprofen two hours apart. I stopped those on Saturday.
My lungs produce phlegm from the fibrosis every day; some days it's a "productive" cough and I can get rid of some of it; some days it's not, and I can feel or hear the stuff but it never makes it out. On the new drug things seem to have been much more productive, right up until there was pink on Sunday morning and a brighter red in the early afternoon. It faded; I figured I was off the thinner regimen and it was a fluke; Monday it was back and faded again. Tuesday there was a brighter red and a larger volume of phlegm and I started panicking a bit-perhaps I've seen too many movies with portrayals of TB in the last century, but I ended up calling the doctor. I see her next week anyway, she said as long as it doesn't worsen not to worry and add a chest x-ray to the bloodwork I'm having done before my visit next week.
Today there has been some pink again, but no real "red", so I'm going to take that as a good sign!
I've been spending a lot of time reading this last week and watching old movies. I introduced my granddaughter to "The Philadelphia Story" a few weekends ago and she enjoyed it so much I think "Bringing Up Baby" might be in order next time she comes!
I hope life is being kind to each of you!