Ups and downs

The good news is, the “leaky pipe” issue FINALLY seems to be under control. During the last 3 weeks I’ve only had one brief incident of coughing up bloody mucus, and that was a week and a half ago. After on and off bleeding at various levels of severity for a month and a half, I’m almost afraid to talk about finally making progress, so here’s hoping I didn’t just jinx myself into a bloody disaster. Listen lungs, you don’t need to prove anything, just be chill!

I had a couple good weeks where my lung function was on an upward trend and seemed to be stabilizing. Despite the bleeding issues, my endurance was better and I barely needed to use supplemental oxygen. Unfortunately, that all came crashing down 2 weeks ago. After a day of increasing hoarseness, fatigue, and shortness of breath, I suddenly spiked a fever. I was convinced that I had caught a virus, but fortunately the fever only lasted one night and I didn’t develop any other viral symptoms. Despite that, since then I‘ve been extremely fatigued and even mild exertion sends my heart rate up and my oxygen level down. So I’ve been back on the supplemental oxygen train while we try to figure out what’s going on and what we want to do about it.

A few months ago if I was feeling like this they probably would’ve thrown me in the hospital. Now, nobody’s rushing to do anything drastic, since I just finished such a long course of IV antibiotics with so little return. I’m also reluctant to increase my steroid dosage, since I finally got the Prednisone down to 10mg and would REALLY like to get off it entirely due to all the side effects. Today we added in some IV fluids to see if extra hydration will help break up the chest congestion and improve my lung function. I have a follow up appointment on Friday, so we’ll see where things stand and figure out our next steps then.

Despite all this, I have been using most of my limited energy for very exciting party planning! Only half a week left until my big blowout 40^th birthday bash! I can’t believe how many people plan to come, and how many people have donated to the GoFundMe! I am so grateful and can’t wait to celebrate with everyone!!