Day 40

Hemoglobin 8.2
Platelets 102
WBC 5.3
Creatinine 1.60

BREAKING NEWS: Republicans, Leukemia Team Up to Repeal Health Care Law

Yesterday I met with a midlevel doctor. She thought things are going well except that my creatinine is elevated again, most likely because of the cyclosporin I began Tuesday. My kidneys seem to be sensitive to even this extremely low dose, so I again stopped the cyclosporin. I'm meeting with Oran again Tuesday and we'll discuss what to do instead then.

I also am going to be evaluated by physical therapy. I think the pain in my feet and legs is (at least partly) because my muscles have atrophied (due to the extended hospital stays and not being as active when at home) and become very tight. Some days my legs are so stiff I can barely walk. The doctor yesterday also explained that when muscles tighten they can do so around nerve endings, causing pain. Couple this with the edema I have in my feet putting more pressure on nerve endings and it could explain the faux-neuropathy symptoms I experience.

I've never been a very limber person, but lately it has gotten ridiculous. Some nights I will lay on my back and have IRael help me stretch out my legs. The next day there is a significant improvement in how they feel, so I think PT will do some good. I hope it will make it easier (pain-free) for me to get exercise, especially once my counts are good enough for me to start training to get my strength back.

Day 38

Hemoglobin 8.8
Platelets 86
WBC 3.5
|Neutrophils| 1.5
Creatinine 1.26

I met with Dr. Oran on Tuesday and again she was pleased with the improvement in most of my counts.  Since my creatinine has finally reached acceptable levels she put me back on cyclosporine.  The dose is only 25 mg (10% of a standard dose) and we will see how my kidneys react.  I believe Dr. Oran wants to increase this dose until we reach the highest level possible that my kidneys will tolerate.  She also prescribed a Z Pack (azithromycin, an antibiotic) to help potentially treat whatever I have been coughing about.  She considers it "overmedicating", but she'd rather be safe than sorry.

I met yesterday with endocrinology and they don't think the problems I'm experiencing in my feet is neuropathy.  It isn't presenting like standard neuropathy, so they think it is more likely due to a medication associated with my kidney function.  They will continue to monitor it, in case it is early-stage neuropathy, but recommended I discuss it with nephrology, hoping they would have some insight.

I also met with my ophthalmologist yesterday about my left eye.  The good news is that there is no serious or continuing damage in my eye.  The vessels are very sensitive and can bleed even if when my platelets aren't < 30.  The bad news is that there isn't much he is willing to do about it at this point.  It may take weeks for the blood to clear, and that's only if it isn't continuing to bleed.  But since my body is still adjusting from the transplant he doesn't think surgical removal of the blood is a good idea.  If I continue to have this problem after things "have settled down", then we can discuss surgical intervention.  For now, I have to wait it out, as annoying as it is having only one good eye.  Maybe I should get a patch...

Day 34

Hemoglobin 8.3
Platelets 81
WBC 2.8
Creatinine 1.37

I met with Dr. Oran yesterday, she was pleased to see that my counts had improved slightly.  She tweaked the dosing on my medications a little more and hopes to add cyclosporin back when I meet with her again Tuesday.  She also ordered a chest CT to investigate this cough I still have, but because I have no other symptoms she didn't think it would show anything significant.

Last Thursday I woke up and the hemorrhage in my left eye was back, again disrupting about 90% of my field of vision in that eye.  It is exactly like when I was inpatient and my platelets were low, but since that is not the case this time (my platelets are at an acceptable level), I'm not sure what is going on.  I have an appointment with a retina specialist on Wednesday to get it checked out.

I have also been having a lot of pain in my legs and feet.  By the end of the day my feet are swollen with a tingling/burning sensation - Dr. Oran believes this to be neuropathy, a common complication for diabetics.  I also have joint pain in my right knee as well as deep "bone" pain in both legs from my knees to my ankles.  I don't think this too is neuropathy, but Dr. Oran is expediting an appointment for me to see an endocrinologist.  Neuropathy is their specialty so they will figure it out.

Day 30

Hemoglobin 8.6
Platelets 72
WBC 2.3
Creatinine 1.40

Except for a few hiccups here and there things are going really well.  Yesterday I met with Dr. Oran.  My biopsy results showed no signs of leukemia, and DNA studies showed 97% of circulating WBCs and 99% of cells in the marrow contain Mitch's DNA.  This shows that Mitch's cells have successfully implanted, have removed most of my marrow cells (thus removing the cancer), and are producing the cells they need to be.  Although not at 100%, Dr. Oran is very pleased with where I am at for only being +30 days.

She is concerned, however, with the fact that my counts seem to be slowly dropping.  The cause of this is not clear to her.  She would be much more concerned if i hadn't just had such a successful biopsy.  Since the tests confirm things seem to be going well in the marrow she believes the cause may be one of my medication.  So we discontinued the MMF a few days early (it only is typically taken through day 31) and switched one blood pressure medication for another.  I will be seeing her again on Saturday to recheck labs and further monitor my counts and medication changes.  She still hopes to put me back on low-dose cyclosporin, pending improved kidney function.

I still have the cough but it is not as bothersome as it was last week.  I have no other symptoms, so careful monitoring continues to be the name of the game.  I generally feel well, my energy continues to improve, and I am able to get out of the house and enjoy the beautiful spring weather we have been having in Minnesota.

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.