Day +142, Thursday

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.

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!