Wednesday, July 18, 2018

One step forward, two steps back


Just when things were heading in the right direction…

On Monday I finally started getting some of my energy back. Prior to that I had been so utterly wiped out that I often napped twice a day, and even with that I still felt completely drained. But on Monday and Tuesday I actually woke up a bit and began to feel like a semi-functional human being again. I was hopeful that things were turning the corner and that I was pulling out of the CF exacerbation.

And then the other shoe dropped.

All month I’ve been having mild issues with coughing up blood. I had a couple days of blood streaked mucus, then a small bleed of 5 mL… a couple more days of streaking, then another small bleed of 10 mL. I was a little concerned that maybe I was ramping up to something bigger, but I was NOT expecting to be hit with an early morning massive bleed out of nowhere. It was close to what happened back in February, and I almost filled a specimen cup with 80 mL of my own blood within the span of 5-10 minutes. Fortunately, though I knew it was bad, I could feel that this one was a little more under control. I was pretty sure that it would stop fairly quickly – and I was right. But I also knew that it was bad enough that it was time for another trip to the ER. So Katherine got to wake up to a really fun 5 am phone call and take me to HUP. Don’t I take her on the BEST dates??

Based on February’s drama, I knew they were going to admit me, so this time I came prepared with a suitcase and supplies. Fortunately, a CT scan did not show any active bleeding, though it did show a small amount of pneumonia. Presumably the infection wore away at a blood vessel in my lungs, but B”H it seems to have sealed itself right up, so hopefully I won’t have any further drama. Just like last time, we’re yanking a bunch of my daily treatments that could irritate my airways and cause further bleeding, and will monitor how I do as we slowly add them back in over the next few days. We’re also continuing the IV antibiotics that I had already started to address the pneumonia as well as reduce the risk of additional infection.

Unfortunately, HUP is pretty busy, and they aren’t sure they’ll be able to get me into a bed upstairs until tomorrow. Which means spending the night in an ER stretcher. At least I was lucky enough to get a cubicle; they’re so busy today that some people are on stretchers in the hallway. I will be very glad to finally get upstairs and settle in, hopefully soon!

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