Moonface, Here I Come

Like glue to a first-grader, a little bit of GVHD is good but a lot is - surprise! -  a big mess.

Jeff has been growing more and more despondent.  Mouth pain and ulcers in his mouth and throat make mealtime less than enjoyable at times.  Shoulders sagging, he dutifully swallows his many pills.  Sighs, head-shaking, more sighs.  He complains of blurry vision.  A weird rash appeared on his torso. 

He'd begun a couple of new medications around the time new symptoms appeared.  He completed two courses of Amoxicillin prescribed by the oral surgeon with a week in between.  And he started Ursodiol (“liver flusher”).  We began to think that his mouth ulcers and skin rash were an allergic reaction to medication.  After all, Donor Nicole is allergic to many antibiotics, including Amoxicillin.  As today's oncology appointment approached we began to believe the skin rash and mouth/throat ulcers, together with the high liver counts, were a good indication GVHD had arrived in force.  

We were right.  At today’s visit Dr. Porter had Jeff pull his lower lip down. 

“Now the upper lip.”  

Jeff did so but Dr. Porter had intended him to have both lower and upper lips pulled back simultaneously. Jeff awkwardly exposed his teeth looking like a horse under a vet’s examination.  

“That doesn’t look bad,” Dr. Porter said.

“Yeah, but they don’t feel like my lips.  They’re dry and numb.”

According to Dr. Porter, Jeff's blurry vision is also attributable to GVHD.  They will cancel the liver biopsy which was to happen tomorrow (to rule out any other reason for the high liver counts and was important to do if only the liver was affected), and the pre-procedure COVID test.  Stop Ursodiol which didn't appear to do anything for his liver anyway.  Add steroid mouth elixir, high dose of oral steroids, Bactrim 3X a week.  Continue antifungal and antiviral meds.  And check blood on Monday to see whether it is safe to begin tapering the steroid dose.  

Seven vials of blood were drawn.  Seven precious vials of what Jeff calls “Nicole’s blood.”  Results:  white blood cells in the normal range, Hg nearly normal, platelets dropped a bit and, of course, very high liver counts.  

Jeff’s primary question for today’s visit was not answered favorably.  He had high (unreasonable) hopes that Dr. Porter would allow his PICC line to be pulled out.  Oh, the disappointment!  He seems more upset about keeping the PICC line than about the warning to reduce sweets while on steroids.  

GVHD is what Jeff's medical team was watching for, expecting.  Dr. Porter considers it a good thing.  He knows what to do about it.  Still, we know how tricky it can be to get off of steroids and, in the meantime, adjust doses, treat side effects – and develop moon face.  It is unfortunate.  We’ll deal with it.