Hi everyone! 

Lots of changes going on yet not much has changed. I am leaving a quick update for now. My lung function/capacity is restricted to 50% which is what it was in December. It is not worse or better, but it is restriction (not obstruction) and the cause of restriction is not known yet. A few autoimmune disorders can cause neuromuscular issues, so the most promising idea is that it is mixed connective tissue disease - which has essentially caused decreased lung capacity by whatever illness I got that caused pneumonia, collapsed lung, etc in December 2019. Many things have been ruled out; many many many many things. My doctors considered/consulted some places in Seattle and ultimately was too long wait with more risk for heart and lung complications compared to other options. Mayo Clinic is still sort of an option, though seeing the specialist I need to would take longer time given all they've ruled out. Fortunately, my insurance covers out of state care so I will be seeking the help of specialists in the Phoenix/Scottsdale area. My brother lives there and this is the best option, for many reasons, at the moment. As I continue to work remotely, I'll be bouncing between places with the help of family and friends. Colton (my brother) and Allison (his partner/wife) have been gracious enough to care for us (Tank and Morgan included) while the logistics and appointments work out. I am exhausted and face more exhaustion/fever/shortness of breath the more I exert so their help has been key to making sure I have enough to continue working while balancing the visits, labs, treatment, etc. Arizona has treated me quite well -- giving my lungs and heart a break. Despite the heat (which is difficult), my lungs and heart aren't working as hard so we are slowly seeing those numbers get closer to normal range. With that, the neuromuscular issues and weakness upon minimal exertion is becoming more clear that this is the underlying issue so hopefully there is an answer in that or in this change. I have appointments in upcoming weeks, pushing more on Mayo (but not too much given the immense complications already faced with them). Mount Sinai in New York City is accepting patients for long term complications following COVID - so this might be a 'next' step; we are still quite a ways from that and not sure.  

Stay well, stay healthy. 

Love,

Lindsey