Day +142, Thursday

Photo of the Day: Walking quickly into Mission Hospital Door #2, after Door #4 failed due to construction. If I look like I’m moving fast, it’s because I was; through a festivus miracle, I actually checked in to my Pentamidine appointment 10 minutes early. Oh, and it was pouring rain & I didn’t want to get any more wet.

Today was busy and passed quickly and I felt strong enough to be able to get most of what I wanted accomplished. The biggie was my monthly breathing treatment of Pentamidine at Mission Hospital, which helps prevent pneumocystic pneumonia (very very important). I honestly a little taken aback when my Respiratory Therapist showed up with a wheelchair. “It’s a long way to walk,” she added, seeing the doubtful look on my face. So I told her about my 5 mile hike the previous day and added, “if I can’t make it part way across the hospital, then something has gone dreadfully wrong.” I made sure to thank her, though- because while I scoff at the thought of being wheeled to my appointment, I’m sure there will be days in the future when I do need the assistance.

Breathing treatment went well and I scored 3 hard candies to help relieve the irritation that occurs when one breathes medicine + saline solution. After making my way back to the car, I spent a bit of time communicating back & forth with the NIH. It was great to check in, have feedback & learn that they’ll be able to see me in just over a month for my +6-month transplant check-up. When I returned home after Day +100, it was unclear if the NIH would be open to patients like me due to COVID. It helps that I’ll be driving.

Then it was a 6 mile hike dodging rain, a quick trip to grab a few things from Ingles, my wonderful, virtual support group and chatting with my folks. They sent us some lovely fiesta dishes – my favorite! – and it was good to catch up. The best part of dinner was talking with Andy about our respective days, and then heading upstairs to play Beat Saber, a beloved VR (virtual reality) game. I was horrible at times, ok at others, cheered Andy on and just had fun.

Andy, playing in Expert mode at a faster tempo. He makes funny breathing noises when he’s trying to keep up that made me laugh.

I’m feeling good, still more energetic than this time last week. Even my skin & eyes feel less dry, and my only headache was on account of the VR. Even better, my leg fluid seems to be diminishing, so while it’s still there & elevated, I can visually tell & physically feel a difference. My feet no longer look like little boats.

Tomorrow involves labs and a walk with Kurt. And as it’s going to be rainy with a dropping temperature later in the day, it will also involve curling up with hot tea, a warm blanket and a good book, which sounds good to me even now.

Happy Friday to all!

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