This Little Light of Mine

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:

Kinda big and cumbersome and, turns out, also kind of tough to crowd into a single-person hospital room that is also populated by a visitor's chair, a table full of snacks (hey, I have CF, it's totally necessary!), a vitals machine and stand-alone thermometer on a pole, an IV pole, and a nurse's station complete with computer and nurse to monitor me throughout the 4-hour treatment. Wowza.

The treatment, by the way, is done (for now, at least) through this tiny little nothing of a catheter. Helloooo, sexy.

The treatment is called photo because of what it does. You've heard of a blood transfusion, right? Well, this is more like a blood transFORMATION. Basically the machine collects blood from my body and spins it to separate the plasma/"buffy coat" (WBCs, for simplified purposes -- "buffy coat" sounds to me like a nail polish color I would prefer to avoid) from the red blood cells. The red blood cells are then stored in a bag and returned to me with saline immediately. The plasma remains in a little cylinder within the machine and is saved until 4 cycles of blood draws are complete. Then the plasma is treated with a medicine to make it photosensitive and run through a tanning bed -- er, make that "UV-light tunnel" -- to create the desired change in my WBC make up. Check this out, guys. 

Top of the photo machine, complete with blood tubes (that's the red stuff, fyi) and the cylinder, which spins the blood to separate it and stores the plasma for treatment:

"Bags of blood" sounds like a bad 90s rock band. Instead, it means these suckers:

Tanning beds are a big no-no post-transplant. Unless, of course, they're for your blood:

Cool. So once the blood is separated, it actually runs through those tubes of UV light you see in the tanning bed. The initial collection takes about 2-2.5 hours (depending, because the machine slows down or speeds up to adjust to your blood flow somehow). The separation takes like 20 mins, but is done concurrently with the pulling -- so you end up with 4 cycles of pulling/separation lasting 2.5 hours total. The RBCs are also being returned to your body after they're separated. Crazy town, right? I wonder if they're lonely.

Meanwhile, the machine keeps you updated with a handy little screen that will say stuff like "collecting 1" (meaning collection cycle #1) and "returning 2." Oh, and remember those bags? Well, they start to look a little different. 

Those are actually just RBCs chilling, waiting to be returned to my body. 

Once the whole collection of the WBCs/returning of the RBCs is over, the machine treats the WBCs and then beeps to let the nurse know its work is done and she'd better take over. That's when the nurse removes the blood store and empties it into a bag, which she hangs and reinfuses via gravity drip -- far and away the most low-tech part of the process. This is what the blood cylinder looks like when it's outside of the machine:

Probably not going to enter that one in many "most beautiful picture" contests anytime soon. Yuckola.

I didn't take any photos of the treated WBCs being reinfused back into my body, probably because my sugar bottomed out at 50 before the thing was over. Not cool, photopheresis and/or hospital lunch tray. Not cool AT ALL. Other than that, my stay thus far has been uneventful. I'm actually managing ALL my own meds this time around because it's really not worth ordering a full regimen of CF and lung transplant drugs up from the hospital pharmacy when I'd probably be close to discharge by the time they got the order right. This makes me happy because I know I have the right drugs in the right doses at the right time already at my disposal. Love my hospital to the moon and back, of course, but what can I say? 

CFers just do it better.

Closing pic for this photo photo post is of the view from my hospital room window at night. The picture doesn't do it justice, actually, but a lot of that black stuff is river. The lights in the distance are New Jersey. Hard to imagine that just about two weeks ago that river was flooded over and those lights were dark from the storm. Hard to imagine that just about two years ago my body was flooded with infection and my own light was growing dimmer. Hard to imagine that this hospital has been a constant space of healing throughout both those disasters -- my city's and my own. Hard to imagine just how much a tiny bit of light can heal.

Love and light, beautiful people. 

On Changes and Catheters

This is me:

This is me with Sampson Bear, just because:

And this is my new dialysis-style tunneled catheter, courtesy of yesterday's visit with my old friend the vascular surgeon:

For some of you (even those of you with working kidneys), this probably looks pretty familiar. It vaguely resembles a double lumen central line, with the main difference being that this is a tunneled cath with one line (the red one) running into my artery and the other line (the blue one) running into my vein. The purpose of this catheter style is remove blood from one side so that in can be treated -- in my case with photopheresis (aka, UV light treatment to prevent chronic rejection) -- and placed back in my body via the second line. The line is different from a port access because, well, there is no port. The lines themselves tunnel into my body and can't be deaccessed unless the entire line is pulled. There's no needle involved and the entire apparatus can stay in place for several months or a year or whatever. It's basically a long-term blood treatment line.

Except when it's not, that is.

In my case, a dialysis-style cath was never really the goal, and it (hopefully) won't be staying in my body long-term. The original plan was to place a specific kind of port-a-cath called a Vortex port, which would allow photopheresis treatment through a more traditional port-style catheter (i.e., one that sits under the skin and can be deaccessed when not in use). My surgeon implanted the current cath in an attempt to "stretch out" my veins to allow for better access for the Vortex port. From my perspective, I went to sleep thinking I was getting a port and woke up with a dialysis cath and, quite frankly, wasn't a very happy camper. I understand why it was done, but I'm not excited about having this new piece of permanent hardware in my body -- even for a week. I'd be lying if I said otherwise. At this point, though, the new goal is to get a full session of the photopheresis treatment through the current cath early next week and then proceed with removal of this crazy line and a replacement with the originally planned vortex port.

All in all this will take me to a total of three "regular" ports, one dialysis cath, and one Vortex port before this whole cycle is over -- a process of "permanent" catheters that began when I was 18, which was also the year my body decided to give up on PICC lines. I'm grateful to have the option of ports and catheters and central lines (oh, my!) but I'm still hoping this next Vortex port might be enough to last me a while. If nothing else, I think "Vortex Port" sounds pretty badass, especially when you consider that my last port was called a SlimPort. We're definitely moving on up in the world of tough guy terminology over here.

But for now, at least, I get to start my photopheresis treatment this upcoming Monday or Tuesday. I also get to meet my new attending transplant doc over at my photopheresis hospital, who will be overseeing my treatment in collaboration with my primary lung transplant team at my regular hospital. Another day, another doctor. Another procedure, another port placement. Another chance, another catheter.

All of which I know will be worth it, in the end, for another beautiful breath.