Day Zero Plus Fifty-six – GVHD?

We got up bright and early this morning for Jeff’s appointment with Dr. Porter.  As we prepared to leave the house, Jeff blew his nose which set off his sensitive gag reflex which caused him to throw up some of the pills he had just taken and some of his breakfast.  He recovered quickly and off we went – with the basin, just in case.  Kim had come for dinner last night and stayed the night so we delivered her to her apartment in the city and headed to HUP.

On Wednesday we learned that Jeff tested negative for C Diff and that Dr. Porter had ordered an endoscopy and a partial colonoscopy for Monday.  They will biopsy tissue to find out if Jeff has Graft versus Host Disease (GVHD).

When we saw Dr. Porter this morning, he said he wanted to change Jeff’s pill regimen quite a bit to rule out his meds as a cause for his watery diarrhea.  He said to hold two doses of Tacrolimus and start it up again tomorrow night at a lower dosage.  That’s good news and bad news since the smallest dosage pill is the largest in size (home-made by HUP’s pharmacy).  He will now get his magnesium with his IV fluids at a slower rate than we have been using; it may take longer than two hours.  He also said to hold Bactrim and Acyclovir for the meantime.  By the time I made these adjustments in the pill case, Jeff had only two pills to take tonight!  Yippee!

Jeff asked about treatment for GVHD and whether it will be a “life-long thing.”  Dr. Porter said, “I am going to be vague about that for now.”  He did say that the severity and duration of GVHD varies quite a bit from patient to patient and that the typical first treatment is steroids.  He said that if Monday’s test confirms GVHD, he will talk to us next week about some newer therapies. 

I told Dr. Porter we found the test results posted on MyPennInfo.com to be very interesting but, of course, we cannot make sense of most of it.  I asked, though, when we would expect to see normal red blood counts.  He said, “soon,” and that red blood cells are usually the last to recover.  He said Jeff’s kidney issues may also be contributing to abnormal (low) red counts.  I asked about his eosinophils which have been elevated – and rising dramatically – since the beginning of the month.   He said that is the reason he stopped Bactrim – in case Jeff is having an allergic reaction to Bactrim, one possible explanation for the elevated eosinophils.   

Jeff asked whether he could drive (!?).  Dr. Porter diplomatically said, “Well, if you’re tired…” and began to list the reasons why someone might choose not to drive.  When we left the office Jeff said he was glad Dr. Porter said he could drive!  I told him that I’d heard a totally different instruction.  The point is moot anyway.  There is pretty much nowhere he can go except to medical appointments and he needs help anyway so…

I am not even going to get into the umpteen phone calls it took to get Jeff’s cleansing instructions for the endoscopy and colonoscopy.  Sometimes HUP’s departments don’t communicate very well with each other.  By 8 p.m. tonight (Friday) we finally had an idea of what to buy, what Jeff should do on Sunday and Monday to prepare.

Jeff has some PT exercises to do.  He likes to demonstrate how easy they are – shrugging, for example – and tell how much pain those “easy” exercises cause the next day.  He has trouble doing them every day because he needs a day between to recover.  We did manage to go for a walk tonight in this heat but, oh, how nice the air conditioning felt when we got home!

I am getting very clever at serving up the BRAT diet in varied ways.  I fry salt and pepper in oil and then add rice or noodles for a delicious – or at least “edible and nutritious” - meal.  I made a nice egg bread in the bread machine for toast.  I fried up cinnamon in butter and lay bread in the pan to sop up the butter and cooked (and safe) spice.  Served with a lovely orange Gatorade and - whoa, baby!  - I’ll be featured on the Food Network before you can say “Grab the basin!”