As part of the 2 year check-up, a pulmonary function test was administered. I failed. The last PFT I took was six months ago and my lungs were functioning at 90%, which isn't bad considering the beating my body has taken. This go around, my lung function is 60%. The research nurse in charge of the SCT survivor study revealed my failure to me after quizzing me about having a cold or some other funk. I haven't had a cold and don't have a reason for failing the test. Chris has mentioned that I've been coughing in my sleep. All concerned think I may have GvHD of the lungs.
That's not something that I was prepared to hear.
It doesn't really get better.
My liver enzymes are up, again. Not to be outdone by my stealthy lungs, my LFTs are WAY up. Signs point to GvHD of the liver.
Wasn't ready to hear that, either.
Dr. K. ran down a list of symptoms that I should be displaying as a result of the wonky lung and liver issues. I'm asymptomatic, which is leaving the transplant team stumped. Those of you who have been along for the ride since the beginning know that I was essentially asymptomatic when I was first diagnosed with leukemia. They had to draw blood to nail it down.
The good news is that if I have GvHD, then I don't have leukemia. The bad news is that I probably have GvHD of the lungs and liver. That's bad stuff. I've spent today in a relatively foul mood because I've been hosting a little pity party.
I would have stayed in my pajamas moping around the house had it not been for part one of a two-part structures exam. That's right, I took an exam today after spending the entire day either getting poked, harvested, or on the road. I am an obstinate glutton for punishment.
The possible diagnosis of major organ GvHD is the major irritant in my life right now. I'm only irritated because I feel that my body is conspiring to throw me off of my schedule. I am determined to see this college thing through. I'm too close to finishing to shelve it right now. I'm irritated because I feel like I've started yet another life-project only to have the proverbial other shoe drop. Size 200 shoes on my size 8 head. If push comes to shove, then of course, my health comes first.
Dr. K. doubled my tacrolimus dose in the hopes that the immunosuppressive might bring my misbehaving immune system back into line. I have to see my local oncologist Monday to have blood drawn. They'll be checking my liver enzymes. If they don't come down at least a little, then I'll have to have another liver biopsy. Winner, winner, chicken dinner.
If the liver function starts to trend in the right direction with the increase in tacrolimus, then I'll have an ultrasound of the liver, instead. I'd much prefer this option.
Since I failed yesterday's PFT, then I have to have another one in the very near future, in addition to seeing a pulmonary specialist. Lucky me, I get to see the doctor that runs the PFT lab. If my lung function is once again sub-par, then I know that a lung biopsy will also be in my future. Call it a strong hunch.
If all of the poo-poo boxes get checked off, then the next step will be to start taking steroids again. I'll be taking something like 66 mg a day. That just pisses me off. If you're relatively new to my adventure, then you can see why in the archives for late 2008 through early 2009. I become a monster on steroids and have a very strong Cushing's reaction. And my bones are fragile enough and there's the whole avascular necrosis thing you have to worry about. Thanks, but I have enough on my plate.
The minor irritant in my life is that I will have to miss more classes to take care of all of this. It's not a big deal. I know this. My professors have been very understanding. I'm just irritated because this is further physical proof of how I'm not normal. It is a gnat in the eye of my existence. I will get over it. I will not let it bother me after today.
For those that like to know, here are my numbers:
WBC: 8.0 K/UL
RBC: 4.32 K/UL
PLT: 340 K/UL
ANC: 5.44 K/UL
ALC: 1.02 K/UL
AEC: 0.62 <---------This is high and is a classic indicator for GvHD or parasite infestation, take your pick.
Ferritin: 3695 NG/ML <---------High, again. This is a measure of the iron stored in your liver. Normal is 10-291 NG/ML. Transplant patients have increased ferritin levels as a result of all of the blood products we need in order to survive during treatment.
Alkaline Phosphatase: 276 IU/L <---------Normal is 38-126 IU/L
LDH: 983 IU/L <--------Arrrghhhhhh! Normal is 313-618 IU/L
Alanine Aminotransferase: 431 IU/L <--------Really? Normal is 7-56 IU/L. To know me in real life is to know that I'm cracking wise about these misbehaving measurements. Right about now, my friends Tina and Heather are cracking up about my nonsensical shenanigans.
I really am fine about everything. I just needed a day to walk around in a snit about things. I know all of these things are treatable and my amazing medical team is on top of it. I'll keep everyone informed of the next step in diagnosing the problem. Thanks for reading my rant and holding my hand.