Monday, Oct 13: skin rash 20% worse

My HVGD skin rash has not responded to the heavy dose of steroid pills and creams.  So, Dr Patel will start me on photo pheresis, which is sort like dialysis.  They run my blood through a machine that exposes it to light and then gives it back to me.

I don't like taking so many steroids.  My hands shake, I sleep poorly, I eat too much, and I'm losing considerable strength in right arm and hand.  It's now a challenge to hold a glass of ice tea or poor milk.

My blood pressure has been elevated, probably due to rash and steroids, so I'll start taking a new pill.  

I'm negative for the two virus screenings, which is good news and the balance of my labs look favorable.  

I'll continue to get X-rays on Thursdays to insure I don't develop phenomia.  

My blood clot filter gets removed at St Paul Hospital on Wednesday.

My Thursday clinic dance card is quickly filling up;  labs, doc visit, chest X-ray, an IVIG infusion, which will take 3 hours, and   some once a month administration from a breathing machine (30 minutes).  Plus, they want me to fast before labs.  

Things are going well, but I feel more beat up and shaky.  It all comes with the process to a cure.

Psalm 27:1 "The Lord is my light and my salvation-- whom shall I fear?"