2020-08-28

wellness log: stardate 2020.08 and some change

a quick recap, for those who don’t know. i was diagnosed with sarcoidosis years ago (2004). over time the small fibroid tumors in my lungs have gotten progressively worse such that i am now at somewhere around 40% lung capacity (probably a bit less) and have failing oxygenation abilities. ergo: supplemental oxygen. i also have a wacked trachea that pulls severely to the right, affecting speech, swallowing, etc., and giving me some discomfort if i’m being completely honest.

when last i sent out an update (april 2020), i had just begun being evaluated for inclusion in the UCSD lung transplant program. i went through beaucoup testing and consulting with various and sundry medical professionals. to cut to the quick of it, eventually i was told that i was not eligible for a lung transplant. there were many reasons, chief among them though was that it would be too risky for me due to my specific issues. the news was bittersweet. it’s frustrating not to have a transplant as an option, of course, but honestly, i did not expect a different outcome.

that said, all in all it was a tremendously positive experience. i’m eternally grateful to the doctors and medical team at UCSD who went out of their way to evaluate my medical issues so thoroughly with an eye to helping improve my quality of life now and not merely as a prospective patient.

while i am still on prednisone, it’s not a lot—it’s manageable. i’m still on some amount of painkillers, but a lowish dose to keep the dull owie thud to a minimum. i did go through some pulmonary rehab appointments which taught me exercises i am able to do safely with my specific condition. check out my getup. aren’t i adorable?


one of my few outings to pulmonary rehab

see that thing on my head? it’s a clever new O2 saturation sensor for the forehead. this method is preferable to the more common finger oximeter which notoriously falls off and doesn’t read as well while exercising.

rehab seemed to help, but since i’ve stopped going in for the sessions, it’s up to me to do the exercises at home—on my own. news flash: i am not as consistent about exercising at home on my own recognizance. 

all my doctors’ appointments are currently online. and i have—for a limited time engagement—my very own speech therapist to help with the vocal cord issues i struggle with. and other than that, i manage. but i manage with help from an amazing palliative care team and an incalculable amount of help from my fabulous, ride-or-die skypeeps. (for more on my skypeeps, check out the about and game pages.) 



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