I haven't talked about this on here yet, but I haven't been doing so great.
It started over a month ago, I guess. I started to have more shortness of breath and I was getting breathless just doing normal tasks around the house. I kind of did a 'wait and see' with it, because a few days after it started I had my hospital follow-up appointment anyways.
At my appointment, my PFT was not good. My lung functions are right back to where they were before the hospital, which is not encouraging. I called Jarrod over lunch that day, crying, because it's just so frustrating. You do everything you're supposed to do, but sometimes it's just not enough. It's just so hard...
We tried a short stint of steroids, and those seemed to help, but not for the long term. I had another follow-up last week and my PFTs were the same. So any progress I may have had while I was on the steroids was short-lived.
We decided to do another stint of prednisone and switch the steroid inhaler I'm on to see if that could help. After a week or so on the new one, I think I'm a little better, but I'm not sure if it's helping enough. I was starting to wheeze quite often, which is not normal for me, and that has pretty much ceased. So that's good. But yesterday was a bit of a weird day; it started out rough, and I wasn't breathing too well, then I cleared out some gunk and felt better, and was able to manage 3.0 mph on the treadmill last night! I don't even know the last time I was able to do that, comfortably. So that's encouraging, maybe I really am starting to make some headway.
The plan is for me to call and check in with my doctors next Monday. I hope I can continue to improve my exercise tolerance through the weekend and that, in turn, will help improve everything else.
You know, this whole "rough patch" has been difficult on me and Jarrod. I feel like our lives are sort of on hold. We're trying things to see if I can improve, and if I can then that's great and we can get back to normal, and if I can't... well... that's not great news. My lung function is around 25%, which is extremely low. It may not sound like a lot, but trust me there is a huge difference in how I felt at 30% versus 25%. If it stays that way, that also means we need to start talking about transplant again because I'm just that much closer to needing one. I mostly keep those thoughts at bay and am not worrying about them until I need to, but it's a truth that needs to be aired. If we can't turn this train around and this is just where I'm at now, it will have a broad effect on many aspects of our lives.
But for now, I'm hopeful. We haven't exhausted every option available. If we have to, I might need another hospital stay. It would suck to have to go in again so soon, but it's happened before. Most recently, when I was out of the hospital, I was nearly back to baseline. So I have a hard time believing that in 4 weeks after, something happened that was so drastic to cause me to lose 5 percentage points and make it so I'll never gain that back. Maybe my steroid inhaler, which I've been on for 4+ years now, stopped having much effect on me anymore. Maybe just switching that up is all it will take, who knows.
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