Today was day 1 of my photopheresis odyssey. Well, okay, so actually it was day 1 of my photopheresis TREATMENT, since the "odyssey" really began several weeks ago when I started exploring new hospitals, conquering new catheters, and just generally raising hell with both the hospital scheduling gods and my long-suffering doctors. But really, I digress. Suffice it to say that this morning at 8:30 am found me sitting in my hospital's admissions dept, sipping bad coffee and ready to get this party started.
Turns out, photo is kind of neat in a very vampirish way. For those readers who might be squeamish about blood: STOP READING NOW! (Also, you may want to try a non-health blog next time.) For those of you who are totally cool with the three CF monsters of needles and doctors and blood (oh, my!), I present to you a Matter of Life and Breath original creation "Photopheresis, in Photos"
Quick refresher: I am receiving photopheresis treatment for recurrent rejection of the lungs, in my case characterized by three bronchs all showing some degree of ACUTE rejection coupled with somewhat wavering lung function. The rejection is, we suspect, somewhat related to my body's decision that it will not absorb prograf for weeks on end, until it suddenly changes its mind and absorbs ALL the prograf it possibly can. These sporadic bouts of high prograf apparently make me more susceptible to infection, while the more consistent low prograf levels make me a fun target for rejection. Don't ask about cyclosporin (the common alternative to prograf) because it's not on the table for me right now.
Anyway, to stop this cycle we've decided to take a different approach. Hence, the photopheresis. This is a photopheresis machine