Drama

Well that was dramatic.

Overall, things have been holding steady the last few weeks. I couldn’t quite get my health back to where I was a few months ago, but despite the ongoing fatigue, elevated heart rate, and shortness of breath, I’ve mostly been able to manage daily living activities and chores as well as get out and socialize a bit. I’ve been working on adjusting to my new baseline, figuring out my limits, and learning how to accommodate them. Obviously I would love to feel better, but I’ve been getting by and doing ok.

On Monday I went to pulmonary rehab and had a typical session, though I was extra tired after being up late celebrating the Eagles Super Bowl win the night before. As soon as I got into my car to go home, however, I suddenly started coughing up blood. I almost always keep a specimen cup with me in case of bleeding to keep track of how much I bring up, which is important information for my doctors. I usually only bring up 10-20 mL, maybe 30 mL if it’s a REALLY bad one. But this was much worse. When I’d filled half the cup with no signs of stopping, I decided I needed help, and went back to pulmonary rehab. They were predictably freaked out and called an ambulance, which I pretty much expected. Fortunately the bleeding slowed down right after I got back inside, and had stopped by the time the EMTs arrived. Unfortunately, I had coughed up 85 mL of pure blood within about 5 minutes, which was pretty scary.

I called my doctors, and they said that much blood is an automatic ER visit. Since the bleeding had stopped, and the ambulance could only transport me to a local hospital which would not be able to cope with the intricacies of CF, I decided to have my mom take me into Philly so I could go straight to HUP. Unfortunately, the ER was jam packed, and despite my Super Dramatic Cup O’ Blood it took almost 6 hours just to get out of the waiting room. Then it was nearly 6 more hours to admit me and get me into a room upstairs. After a long, hungry, exhausting, and exasperating night, I finally got to my room at 6am and grabbed a few hours of (interrupted) sleep.

There isn’t really much they can do for bleeding, unless it’s extreme and/or won’t stop, in which case they have some fun and exciting intrusive treatments they can offer. Since my bleeds have all been self-contained, we aren’t going there. Right now they’re mostly monitoring me, since I’m at higher risk for an uncontrolled bleed right now while things heal. There was some talk of a bronchoscopy to go into my lungs and look for trouble spots, but they’re holding off on that unless I have another bleed in the next couple days. We temporarily suspended some of my daily treatments to prevent additional irritation to my airways, so the goal for tomorrow is to start re-introducing a few and see how I tolerate them. If I can get back to my regular treatment routine without incident, I should be able to get out of here within the next few days. Fingers crossed!

I was seriously considering going to the big parade on Thursday, but clearly that’s off the table now. It’s probably just as well, since from all reports it’ll be a crazy mob scene, and I can’t imagine trying to maneuver the wheelchair through that chaos would go very well. I am very grateful, however, that I got to have a great weekend filled with friends, family, and fun before all the medical drama went down! And the hospital staff enjoyed my still-green Eagles hair, which I didn’t have a chance to wash out before being admitted. It was getting pretty gross so I washed it out today, but maybe I’ll make an Eagles themed Pole Person to replace it!

Speaking of Pole People, enjoy the latest additions!