Rejoice in the Roses

It's been a while since my last post, and mostly uneventful medically. I've been slowly building strength. I've had few medicine or regimen changes.  

Until last week. Lab results come back and my nurse provides me with the results. My white blood cell count is down again and my parvo titer is exactly the same as before my last two IVIG infusion treatments. :( 

Huh?

She directs me to decrease Cell Cept medication a little to give my white blood cells a chance to come back up, and lets me know I'll need to come in for two more IVIG infusions. Frustrated and bewildered, I head to the hospital on Wednesday to get the treatments.

As far as hospital visits go, it is pretty routine in regards to time. I get admitted at 9am, get an IV at noon, and actual treatment eventually starts by 3pm.They start my second infusion 12 hours later at 3am. Everything feels slow(as expected), but smooth.

My Vein Illuminator

(The coolest part of the visit is getting my IV inserted. It takes 7 attempts by three different techs. It sounds like I'm complaining, but the 3 women and the time they spend with me make the whole annoying visit worthwhile. Exhausted and inexperienced and kind and amusingly light-hearted, they are gracious for the opportunity to practice on my arms without me grumbling or complaining about the pain. As usual, my veins are less than compliant, but today I get to see something I've never see before...my elusive veins that I always

Practice for the Med Techs

hear about! After a few failed attempts, they bring out a vein illuminator, which detects red blood cells and makes the tiny veins visible on my skin!)

"Dr" Adam, the pharmacist who is leading my parvo care, stops by to update me as the infusion is finishing. He tells me the lack of decrease in my parvo titer is "personally insulting" to him. Just like me, he expects a significant drop in the parvo number. Color us both disappointed.

He goes on to tell me that there's a reasonable chance to therefore expect the parvo in my system to not be eliminated, potentially ever. (I swear I hear the "dun dun duuuunnn" of The Magnum Opus from scary movies as he pauses to let it sink in.) He believes my body's immune system is more compromised  by immunosuppressants than your average transplant patient.

Here lies the problem...they can't decrease the immunosuppressants any further(giving my immune system a fighting chance to defeat the parvo) because that puts me at a way-too-elevated level of risk for organ rejection, especially since I've had 3 bouts of rejection already. Without a boost to my immune system, parvo is likely here to stay.

My brain is trying to soak up this new information objectively. 

"So, what does that mean logistically?"

Adam tells me first, we'll have to wait a month to confirm results again, but assuming they're the same, there are 2 options:

1. Have a maintenance IVIG treatment routinely (maybe about every 6 weeks), indefinitely. The parvo will not be eliminated, but could remain controlled.
2. No maintenance doses, but just wait until I become anemic/sick and then treat with infusions and transfusions if necessary. Again, there will be no parvo elimination and will need to be treated indefinitely.

"Indefinitely means...?" I can't process it quickly enough.
Dun-dun-duuuunnn...
"Forever," Adam answers abruptly.

Yuck. 

Parvo...forever. 

Immunoglobulin treatments...forever. 

Limitations...forever.  

Freedom...never.
Adam and I feel defeated together.
 A frazzled med student rushes in, bringing his own private dust storm like PigPen from the Peanuts. Without looking up from his clipboard, he rustles papers and asks,  "How long since your last chemo infusion, Ms Win-" ...He's in the wrong room.

PigPen shuffles out quickly.
Adam raises a Groucho Marx eyebrow at me.
"Parvo's not so bad..."