Frustration

Things seem determined not to go smoothly this time around.

During the last few weeks I’ve been sporadically coughing up small amounts of blood. This week the bleeds were a bit more frequent and slightly more severe, which is concerning as previously that pattern led up to a big bleed that landed me in the hospital. The normal response to bleeding is to hold some of the treatments that can be irritating to my airways, but we’ve been hesitant to do that as I’m still very congested and really need those treatments to help pull me out of this exacerbation. It’s a catch-22: the treatments could provoke a bleed, which is bad for my lungs, but holding treatments increases congestion, which is also bad for my lungs. Increased congestion can also lead to increased infection, which can provoke bleeding. There’s no good answer here, and I’ve pretty much been walking a tightrope, hoping not to fall off.

Last night things finally gave way, and I coughed up 25 mL of pure blood. Thankfully that’s not ER level, but it’s significant, and left me no choice but to hold treatments. Currently I’m under orders to hold treatments until my mucus has been COMPLETELY blood free for 48 hours. The 48 hour countdown hasn’t even begun yet, as my mucus remains blood streaked, though thankfully far less so now than this morning. So I’m already 1 day into holding treatments, and have at least 2 more days to go, if not more. Each day without these treatments means I’m less able to clear the congestion out of my lungs, and makes it more likely that I’ll lose the little ground I’ve managed to gain over the last several weeks of IV antibiotics. I also can’t exercise or do anything to elevate my heart rate, as the extra pressure on my weakened blood vessels could trigger a bleed, so any efforts to regain my strength and get back to normal life have also been put on hold.

Honestly, I am extremely frustrated right now. I have now been on IV antibiotics for 7 weeks straight, and will probably be going into week 8. I have a follow up appointment tomorrow, but we can’t even do pulmonary function testing because the effort involved could provoke a bleed. I’m pretty sure they’re going to keep me on antibiotics for at least another week while we get the bleeding under control, so that will be 2 full months of treatment. It was already upsetting that with all this treatment I’ve made such limited progress. To now be forced to stop the treatments and exercises that could help me move forward and watch at least some of that progress be unraveled is just infuriating. On the other hand, I’m also terrified of having another massive bleed like I did in February and July, and I REALLY don’t want to go back in the hospital. I’m caught between a rock and a hard place with no way to win here.

I’m tired. Hopefully things will get better soon.