Thursday, October 18, 2012

If You're Feeling Sinister

There are lots of words that most post-transplant patients aren't very fond of hearing. "Prednisone", for example, or "infection", "bronch", "flu-season" (one word for the purposes of being super scary), "IVs", and my personal least favorite: "hospital." But all of those words, scary as they may seem, are downright joyful compared to the one word that all organ transplant patients dread beyond all others. Yep, you guessed it:


Y'all might remember that a few weeks ago I was hospitalized (bad word #1) for IVs (bad word #2) because of a bronch (bad word #3) that had shown some sinus infection (bad word #4) and some prednisone-resistant (REALLY bad word #5) rejection (horrid, terrible word above all other bad words). As I explained then, the plan was to hit the remaining rejection with the big guns and wipe it all out in one very effective -- if somewhat uncomfortable -- shot so that life could continue more or less as normal for Donor Bob and me. So I checked into the hospital, I got the IV treatment, I took antibiotics for the infection, took the rabbit serum for the rejection, and then was released back on the world with the understanding that we would repeat the bronch in a couple of weeks to ensure that the rejection had indeed been, well, rejected. 

I had my repeat bronch last Thursday and honestly, it went fine. My lungs, according to my doctor, looked pretty good. My infection seems to have cleared up at least enough for me to be breathing a little more through my nose, and my O2 saturations have climbed back into the decent, if not terribly awesome range. As far as I was concerned, all systems were go and the results were bound to be good. Sadly, this is why I choose a career in law rather than fortune telling. Because my bronch results apparently are still showing some mild rejection, even after steroids and rATG, and that, in a word, is just plain uncool.

So what do you do when the big guns fail? Well, apparently you go nuclear. This is all starting to sound a little sinister to me.

My doctor and I have discussed our options and are leaning toward a process known as "photopheresis." Now JDs might be know-it-alls, but most of us are in NO way MDs, so bear with me on this explanation. My understanding is that photopheresis is a process through which blood is taken out of the body, separated into red and white blood cells, and then the WBCs are treated under UV light to cause some sort of small mutation. The mutation, I believe, then somehow acts to inhibit the body from producing or using t-cells to attack the lungs. That's the complicated part that I don't understand. What I do understand, though, is that this treatment involves removing blood from my body, treating it, and returning it, and that I will need to undergo those treatments for a while, at least. I'm currently working in true Piper style to make sure that this process is 1) medically effective (this part comes from being engaged in the process and trusting my docs) and 2) personally acceptable (this part comes from being engaged in the process and trusting myself). I'm hopeful that between the awesomeness of my very astute and capable medical team, the awesomeness of my wonderful family and friends, and the awesomeness of me that I can actually drag out every once in a while, that this is going to end in one truly awesome result.

In the meantime, a part of me can't resist the fun timing of being hooked up to a vampire machine just in time for halloween. (Well, okay, I could totally resist it if they gave me the option, but since they haven't I'm just gonna run with it.) I've come to the hard-won conclusion that this treatment might be all about sucking my blood, but it is in no way going to suck my spirit or my life -- at least not so far as I can help it. My mission is to trick this rejection into giving up, while treating myself to as much normalcy as possible, and if that means I have to fake it 'til I make it for a little while at the outset, well, I've always been good at costumes. And as for you, CF, I have just four little words of advice this Halloween season:

Be afraid, little monster.

Because I'm not.


  1. Wow that sounds brave! I'm 4 years post transplant and have never had photo but did have ATG treatment once. I remember it made me really tired. Remember to rest! Thinking of you. You're an inspiration!

  2. I read another blog a while back about them having photopheresis done. Let me look to see if i can find the link!

    She said it really helped!

  3. Hey Piper,
    I had to have photo 8 years ago. I am post transplant (double lung living related) I am almost 16 years post surgery. My pfts were in a downward spiral in 2004 and photo halted the decline and has stabilized my lung function. I totally reccomend it! It required one needle stick that was not too unpleasant and I otherwise I found it very tolarable. The only cumbersome thing was the 3hr treatment time which I believe is two days a week and gradually tapers off during a 6 month period. It saved my life. Get some cool shades cuz you have to wear 'em after treatment as they inject your blood with a photosensitive chemical before they circulate it under the UV. Good luck! Let me if you have any other questions...
    love, Chris

  4. Hi Piper -- thanks so much for your kind comment on the Liam blog. It was really nice; I love hearing especially from people who Will "talked" with.

    I follow your journey still and I'm so excited for you -- I'm not sure that's the right word, but I can't think of a better one -- that you're going to get such aggressive state of the art treatment for this rejection. Rejection sucks, of course, but stopping it will be awesome. Will never had photo, it was never really discussed, so I don't have any memories or information to offer, except to say that I hope it goes well, and works fast and without complication, and isn't too much of a pain in the ass.

    I still feel so connected to all of you who I met or follow online, and to the whole CF community, it really is nice to hear from you. Please look us up if you're ever out this way visiting family -- we'll make you pizza.

    Much love,

  5. wow Piper your zest for life inspires me...truly
    Candace (yplc)