They see me rollin'

I’m still dealing with what I’m now thinking of as Leaky Pipe Syndrome. Thankfully I haven’t had another full bleed, but I keep randomly streaking. Yesterday I finally managed 48 hours blood-free and resumed one of my treatments, only to streak at the end of the day and be forced to start all over again. Previously we wouldn’t react so strongly to just a little streaking, but my recent history of Big Dramatic Bleeds makes everyone anxious so we’re being very cautious. I have to keep reminding myself to Be Very Chill and not do anything to elevate my heart rate, which these days basically means not doing anything at all exerting. I am not enjoying being so limited and feeling this fragile.

Today I got my first experience using a motorized cart at Shoprite. I really wanted to actually go food shopping instead of trying to figure out what I needed online, but I also knew it definitely wasn’t safe to do that much walking. So I swallowed my pride and grabbed a motorized cart. I did feel awkward about looking perfectly healthy while puttering around on a scooter though, so I kept my oxygen on the whole time even though I didn’t really need it once I was sitting. I figured no one would question the girl with the nasal cannula. I managed to only run over Katherine’s foot once, and though I ALMOST knocked over a couple displays, nothing ACTUALLY ended up falling. Using the scooter ended up being a weird combination of fun, annoying, and occasionally slightly terrifying. Those things are harder to drive than you’d think!

Katherine has been amazing through all of this craziness. Since I’m mostly incapacitated, almost all the household tasks have fallen to her. I can put together a shopping list and zoom around on my scooter picking things out, but she’s the one shlepping it all home and putting everything away. Not to mention cleaning, and laundry, and just about all the things that keep a household going. I feel terrible about not being able to contribute much, but she does it all without complaint and reassures me that she’s happy to take care of things. I’m not sure how I got so lucky!

Of course, she did get entertainment value watching me almost take out an entire cereal display with my scooter, so maybe it’s a fair trade. Here’s the photographic evidence she took of my Shoprite experience. Maybe next time she’ll get video!

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!