Another Hospital Visit Today

Sheila and I had to run to the hospital unexpectedly at the last minute the other day to visit the lab in preparation of today's scheduled visit.  I figured I would be heading to the lab after my appointment that was scheduled for today but my oncologist wanted the lab tests done beforehand.  I got a phone call from Oncology requesting I head to the hospital two days earlier than planned.  Then, this morning, we headed up to UVM Oncology again for my scheduled appointment.  

My usual lab results had no changes which is good news, I suppose.  The same things that have always been wrong with my lab results indicating Systemic Mastocytosis are unchanged.  The good news part of this equation is that the numbers aren't worse.

My oncologist was a bit concerned about two things...  1) She seemed shocked by how low my oxygen saturation is getting at least once every week.  She was visibly surprised hearing that my O2 levels are getting down into the 80s (%) and sometimes even lower.  2) She was also quite surprised to hear that I am still experiencing anaphylaxis at least once every month.  This doctor is always good at listening to what I have to say and she tends to keep a good neutral poker face but there was no neutral poker face today when I mentioned these two ongoing problems.  

All that can be done about these two issues is emergency treatment with medications which, supposedly, I am doing as effectively as it can be done.  Time will tell how this illness progresses...  or even if this progresses.  I always wonder what info my doctors might be withholding from us or if this rare illness is still so rare that there is not enough case study research to support predicting disease progression or regression.  However, I suspect that any regression is probably wishful thinking.  

Since I have been having severely debilitating joint problems and bone pain this entire calendar year, my Oncologist thought it would be best to run one more lab test today to check for Lyme Disease, just in case.  So, there was more good news here...  my lab results from today came back negative for Lyme Disease.  

The bad news is that there are no lab results providing a reason for my debilitating joint and bone problems.  The assumption then is that it is either my mast cell disease getting worse clinically (slowly wearing down my body) or it is "long haul" COVID-19 problems.  Either way, little can be done.  

On the positive side, I haven't had to use my cane this week at all and I haven't used my crutches in a couple of weeks.  Hopefully this trend toward more normal joints will continue.