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.

Day 20

Thursday my doctors gave me a goal to drink 3L of water that day in an effort to keep my kidneys hydrated and my creatinine low.  I did, but by Friday morning my creatinine had jumped back to ~1.8.  The decision was made to take me off the cyclosporine, since functioning kidneys trump anti-rejection (I am still on the MMF so I am not completely off anti-rejection meds).  I have an appointment with Dr. Oran Tuesday morning to assess my medications and, I am assuming, add another anti-rejection med.  The problem is, I was told by the doctor I saw on Friday, that the next common anti-rejection drugs have interactions with VFEND, the ever important antifungal I take.  So she did not substitute another drug for the cyclosporine for now.  This runs the risk of GVH appearing before I see Oran on Tuesday.  So far I have probably felt better off the cyclosporine than I did while I was taking it (the side effects of that drug were awful).  However, I think I am showing signs of GVH:  I have changes to the skin appearing on my head and my GI tract has become irritated.  The skin on my forehead and in my hair has an odd bumpiness to it.  It is not painful or even very noticeable unless you look closely, but I feel this may be how it begins.  We will see what Oran has to say about it on Tuesday.  My hope is that I am put on a new anti-rejection and, if my symptoms are because of GVH, they disappear without the need for further treatment.  Acute GVH is treated with high-dose steroids, and we all know how much my diabetes would love that.

I also have a bone marrow biopsy Tuesday morning...ugh.  Just thinking about it makes me depressed.  It will be a first look at what is going on in my marrow and how Mitch's cells are doing.  I am not quite sure what to expect, if there will still be leukemic cells present, or my cells present, or what.  Good questions for Oran I guess.

Day 17

Hemoglobin 9.2
Platelets 147
WBC 4.0
Creatinine 1.62

My creatinine was lower today, so my kidneys seem to have responded well to better hydration.  I didn't receive another infusion today, instead I'm trying to drink about 3L of water on my own and see how my kidneys react to that.  If that's not enough I'll receive an infusion tomorrow at my appointment.

Today I felt worse than usual.  I wonder if it is related to my kidney function (since I didn't receive the fluid infusion today).  We'll see how things go tomorrow.

Day 16

Hemoglobin 9.5
Platelets 142
WBC 3.7
Creatinine 1.81

I was pretty nauseated again today, I think mainly due to the medications I'm taking.  The doctor I saw today thinks the reason my creatinine took such a jump is because I am not drinking enough water.  So today at the clinic they infused a liter of saline and will see if it impacts my creatinine when it is tested tomorrow.  If not then they will change my medications.

I didn't prepare what I wanted about my medications like I said I would yesterday.  Maybe for tomorrow.

Day 15

Hemoglobin 9.6
Platelets 128
WBC 4.8
Creatinine 1.77

It's great to be home, but it is also much more difficult.  I get tired fast, but it is just like the previous times I have been discharged, so I expected this.  The worst part are the pills I need to take.  About 40 total every day, many of which are used to combat the side effects of other medications.  I will have more on that tomorrow.

My creatinine also took a huge climb, which is worrisome.  Hopefully it is just a fluke spike and tomorrow it will have decreased.