Not again...

I guess I should’ve gotten an update out yesterday before anything had a chance to go wrong…

I felt noticeably better over the course of the weekend. My heart rate didn’t shoot as high with mild exertion, I was able to maintain oxygen without using the concentrator, and I had a little more energy. At my appointment on Wednesday my pulmonary function was up to 52%, which made me very happy. Overall we were pleased with how things were going and I seemed to finally be on a stable, upwards trend.

But apparently this rollercoaster isn’t over QUITE yet. This morning, after 2 full weeks with not the slightest hint of blood in my mucus, I suddenly coughed up 15 mL of pure blood out of nowhere. I literally yelled “NO!!!” as soon as it happened, because I was so frustrated to once again take a step backwards right when things were looking up. Fortunately it was less than the bleed from 2 weeks ago and wasn’t close to ER level, but I still can’t help feeling that my lungs are like dilapidated, rusty pipes right now, just springing leaks all over the place without warning. So once again I’m holding various treatments until I’m completely blood free for 48 hours. Unfortunately this time I’m not on any home infusion, so I don’t have that extra support to help make up for the missing treatments. Hopefully the bleeding will stop soon and I won’t lose too much ground.

I also got to do a super fun barium swallow yesterday to see whether I’m aspirating things into my lungs when swallowing. Fortunately it turns out that I’m swallowing fine, but I’m definitely having significant reflux (which we already knew), and there’s concern that I may be messing up my lungs by aspirating that. I’m already on a bunch of reflux meds, which control the acid level but can’t stop the reflux from coming up. We started exploring surgical options a few months ago, but put that on the backburner while dealing with respiratory issues. Once we get things stabilized the plan is to continue testing and consultations to move towards surgery and see if that helps with some of the respiratory issues.

On the plus side, before things went south, Katherine and I took advantage of the good weather and my relatively decent health to go to the Mummers Parade! I’ve been watching this Philadelphia New Year’s Day tradition on TV since I was a kid, but never actually made it there in person. We shlepped the wheelchair on the train and joined the crowds at Broad Street and Sansom to watch the string bands perform, and had a great time! And one of the mummers even gave me his parasol, which was super cool!! Apparently looking pathetic in a wheelchair has its advantages!

I’m definitely frustrated about backsliding once again, but I’m glad it at least waited until after I squeezed in a great experience! Hopefully that was the last hurrah for this CF exacerbation, and I’ll get back on a steady upwards trend soon!