Almost there

My cough is easing, my endurance and energy are improving, and overall I feel much better than I did a couple weeks ago. My pulmonary function numbers, however, barely moved. We didn’t really expect them to though, since the same thing happened in December: I got significant symptom relief, but limited pulmonary function improvement. We’re going to do one more week of antibiotics to solidify things, and then start working on long-term plans. The first step is seeing whether I maintain my health once the antibiotics are stopped, or if I fall apart as quickly as I did last time. I’m hopeful that I’ll do better this time as long as I don’t catch another cold like I did in January. So if you have any respiratory infections, please stay away from me!

I need to stay on the anticoagulant for another month once the PICC line is pulled to make sure I don’t get another clot, and then we’re going to work on treating the aspergillus and seeing whether that makes any difference in my pulmonary function. Here’s hoping I can keep it together until then, and that aspergillus is actually the culprit so that I’ll see improvement once it’s treated!

Home sweet home

My meds are stabilized and they're sending me home on IV antibiotics this afternoon. Looking forward to a quiet, uninterrupted night's sleep in my own bed!

Back to the hospital

The good news is, I’m doing better than when I was dealing with a cold in January. The bad news is, I never quite managed to fully recover. We tried oral antibiotics, we tried Prednisone, but they didn’t seem to have a significant impact. I’m basically back where I was before going on IVs in December: daily coughing fits, low endurance, fatigued, and just kinda slogging through day by day.

For the last few months my doctors have been discussing starting treatment for aspergillus, a fungal infection that has been in my lungs for decades. The thing with aspergillus is that it doesn’t necessarily have any symptoms or impact, and there’s no way to know whether or not I’ll get any relief from treating it. It’s also not a quick fix, and will take months of treatment. However, aspergillus can slow response to treatment during CF exacerbations and impede full recovery, so it COULD be a factor in my recent health issues. All plans were put on hold when I got the blood clot, however, as the medications to treat aspergillus interact with the blood thinners that I’m still on due to the clot.

By the end of this month I should finish up the blood thinners, and we can get to work on the aspergillus. In the meantime, however, I’m feeling pretty crummy – so we’re gonna go for another round of IV antibiotics and try to get things back on track before then. I’m heading to the hospital whenever they have a bed for me, hopefully later today. We’re also going to work on an ENT consult to see if my sinuses are contributing to my health issues, as well as a glucose test, because apparently untreated CF-related diabetes (CFRD) can cause respiratory problems. Fun fun!

Here’s hoping we get some answers and effective treatment options soon. And that I manage NOT to catch a cold as soon as I finish IVs this time around!!