Friday, November 9, 2012

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.


  1. Oof, that looks painful! I've had 2 ports so far at 24 and am hoping not to need another for a loooong time. Reading your story about your port infection actually helped me alot when my first port got infected. Good luck with this new catheter and hope you get what you wanted soon! Keep smiling!

    Xoxoxo...Cara and Dan

  2. Piper,

    Hoping and praying the photopheresis treatment works as it should, with the end result being a welcome rest for your body for awhile.

    Hugs from Kansas,