Day 22

Hemoglobin 9.3
Platelets 120
WBC 3.4
Creatinine 1.77

I met with Dr. Oran today.  She is pleased with how I am doing but hoped my kidneys would have recovered better than they have.  My hemoglobin, platelets, and WBC counts have stabilized within acceptable values.  This is especially good news for my WBC - she has confidence in their ability to begin defending me.  So much so that I am discontinuing the 1000mg of Penicillin I was taking each day and reducing the amount of Acyclovir (anti-viral) I take from 4000mg daily to 2400mg daily.  Both good steps in the right direction!

Dr. Oran had hoped that my kidneys would have recovered better than they did (they actually showed no improvement) since stopping the cyclosporin.  If they had, she wanted to put me back on the cyclosporin but at a much lower dose, hoping to find a sweet spot that would allow me to be on the drug while keeping my kidneys happy.  But since there was no improvement in my creatinine level she did not add the cyclosporin back.  She did not replace it with any other drug either.  I did not ask why another was not prescribed to take cyclosporin's place.

Dr. Oran also said that the "rash" that has appeared on my forehead - and now spread to cover the top and back of my head and neck, behind my ears, and onto my chest - is not a typical presentation of GVHD.  She called it acne, although it is unlike any acne I have ever seen!  Not that it could not be an early presentation of GV"HD she added, but still unlike how the disease typically presents.  Good news, I guess, and since the rash still has no other symptoms - no itching, burning, peeling, associated fever, etc - I guess it is a minor concern.  She prescribed some hydrocortisone creme in case it is developing GVHD and we will see if that has an impact.

My biopsy went well, it was probably the best one I have had yet.  For the biopsy they take two kinds of samples.  The first is a bone core taken from the iliac crest of the pelvis.  Using a hollow cylinder with a sharp edge they screw out a small core.  They then insert a needle into the hole left when the bone is removed and draw three syringes full of the liquid marrow found on the inside of bones.  This liquid is called the aspirate.  They use lidocaine to numb the area to remove the bone core, so that process is not painful at all.  Drawing the aspirate, however, has been the most bindingly intense pain I have ever felt, and, unlike the lidocaine, there is little that can be done to reduce the intensity.  This time, however, the pain had only a slight edge.  It hurt, but nothing like previous biopsies I have had.  I hope I can get the same doctor to perform all my future biopsies.  The combination of her skill, the lidocaine, and the fentanyl-ativan combo I also received made the experience much more pleasant than usual.

My next appointment is with a mid-level - a doctor but not an attending like Dr. Oran - on Friday for a follow up to the medication changes made today.  I will meet with Dr. Oran next Tuesday to discuss the results of my biopsy and reassess the cyclosporin situation, hoping for an improvement in my kidney function.  My mission is to drink 3L of water each day between then and now, hoping it is the love my kidneys have been looking for.