Monday, June 28, 2010

Here's The Tricky Part

I made it.

Just got home from my first post-transplant clinic day, and I don't mind telling you all that it was...exhausting? Exhilarating? All of the above?

Okay, let's just go with intense. And new.

The newness of it threw me for a bit of a loop right off the bat, actually. I knew not to take prograf (anti-rejection drug) the morning of clinic before my blood draws, but I immediately got confused on whether I was allowed to eat beforehand, or whether I should take my insulin (sidenote here: I've been on insulin since the transplant to deal with high blood sugars, most likely caused by the high-dose steroids I'm on right now). Figuring better safe than sorry, I held off on everything until after the blood draws, which then left me scrambling for a clean, private place to test my sugars, inject insulin, and then eat a quick breakfast before moving on to my next clinic activity. Turns out I could have eaten in the morning and saved myself the trouble. Whoops. Oh well, did I mention there's a bit of a learning curve here?

Anyway, confusion aside, everything ran pretty smoothly. Col Pres does blood draws (with drug levels), chest x-ray, and then PFTs -- all of which are done on a walk-in basis before you get to your actualy transplant doctor. So since my transplant appt was for 10 AM, I showed up to the hospital at about 8 AM to get the other things out of the way first. I got my blood drawn (veins still bad, but what else is new?), did my x-ray without issue, and then headed over to the PFT lab, where I was lucky enough to meet a woman coming up on her 2 year anniversary of transplant. She and I chatted for a while about everything from time onthe list to transplant recovery to going back to work -- it really is amazing to feel part of the "transplant club" at last! Then I got called back and headed in for my first PFTs with my new lungs, ever.

Now, keep in mind that, as my doctor reminded me, many people haven't even left the hospital by 2 weeks out, much less blown PFTs yet. So this was kind of a test run just to see where we were, and how the new lungs were responding to my cues, etc. Suffice it to say, I was beyond nervous and excited to see how I was doing. And then came the big moment...

45% FEV1.

Wow. I can hardly believe that number, and I keep going back to my PFTs to stare at it. More than that, I can't believe the beautiful arc that my flow chart showed, especially considering that my lungs still feel compressed by my scar and my chest. It was so amazing, so life affirming, to blow that number and know that these PFTs will just keep going up (God willing). Obviously life is about so much more than the numbers, but I have to admit: it feels darn good to get some good ones for once.

Then came clinic itself, and that's where things got a tiny bit more complicated.

First of all, I just want to say that my clinic is amazing. My doctors are fabulous, the coordinators were excellent, and the experience overall was very friendly and reassuring. Everyone told me I looked great, was progressing well, and was doing a good job taking care of my new lungs. My heartrate was a bit high, which tends to be an issue with me, and we are going to try some things to get a better handle on it, including an appointment with a cardiologist at Columbia. I feel better having had the conversation about that, though, so hopefully we're already on track for smoother sailing on that front.

The other issue was that my bronch last Friday showed some A1 level inflammation/rejection, so I have to go on a prednisone burst.

I thought that surely the first time I heard the word "rejection" I would freak out. I thought it would send me into a minor tailspin even though I told myself (and I have been told repeatedly) that some minor acute rejection in the first months is common. I thought that I would have to talk myself down from the ledges.

But I didn't, really.

I'm disappointed, of course. I wish there was zero inflammation issues in my beautiful new lungs. I would love to continue on my gleeful little course of no bacteria and no other problems. But as far as issues go, I also recognize this as treatable, under control, and not a huge catastrophe. I mean sure, I broke out into a sweat when I first heard, and I definitely had (and probably will continue to have) a few moments of "oh wow, really?!" But overall, I'm mostly concerned with the lack of sleep I know is coming from the prednisone taper than I am with whether this will be resolved. I feel entirely confident that I will get through this and that it is not a sign of bad things to come. Maybe it's that 45% holding me up, but I know these lungs and I were meant to be together, and I'm willing to take the bumps in the road, especially considering I have no choice.

I realized today that I have a huge amount of trust in my transplant team -- in their ability, their kindness, and their wisdom. This is huge, and makes, in my opinion, all the difference in the world. I also have an incredible support system in my family, and my mother's strength today was a huge reminder of that. She helped me calm down after the insulin debacle (I was a little stressed at that point, to put it mildly), helped me get from place to place and navigate the maze that is clinic visit #1, and helped take notes through the clinic itself. Now that we're home and watching Wimbleton on TV, she's finally get some well-deserved rest.

I guess the lesson for today is that things don't always go exactly as we plan them, even when we think it's going to be something as easy as clinic. But when the dust settles, hopefully we'll have learned something about ourselves, and maybe even about the people who help us through it all.

And if we have to lose some sleep over it all, well, at least that's another hour in the day to just be grateful.


  1. It's a little overwhelming at first, for sure! I, nor I'm sure my mom and Mike, will ever forget my breakdown about 12 days after tx in Denny's. lol!

    My first tx clinic was much the same way... long, tiring, I was hungry, what test now, my back hurt.. but it gets better so quickly and seeing those #'s is a serious rush!!!

    Continued good thoughts coming your way! ... and yes, welcome to the "club!" ha!

  2. i love reading your blog piper. i don't always get a chance to comment, but every post reminds me of the emotions and thoughts that are still so fresh in my mind. i'm going through A2 rejection. i'm not freaking either, but would rather it just not be there! haha.

    45%!!!!!!!! that's awesome for such new lungs! i wasn't even allowed (or wanted) to do PFTs at that point!!!
    don't you just want to frame the piece of paper that says your lungs are at 45%!!!!!! wooooooo!!!!!

    i am so happy for you! i am glad you are home, and navigating through clinics. stanford's clinic sounds identical to the one there (walk in labs, xray, pfts) all that.

    hope you get some sleep! xanax turned out to be the only thing to help me sleep. sleeping pills did nothing for me, in fact i think they actually made it worse. hope you figure out what works for you!

  3. Thanks so much for that update. You have a way of describing things that makes me feel like I'm right there with you.

    Btw, what was your pre-op FEV1?

    I'm not a CF'er, but I do have end-stage severe asthma. My baseline FEV1 is generally in the mid 30's to low 40's, so I kinda have an idea of what your breathing must feel like at 45%.

    Anyways, so glad to hear that you're doing so well.It's incredible how fast you are progressing.

  4. 45% 2 weeks out???? Holy cow, that's amazing!!! You will be seeing 100% before you even know it! Way to go!!!

    Glad you didn't freak out about the rejection. No biggie as you already know!! :) That pred burst will take care of it and your pfts definitely aren't reflecting it!!!

    I don't remember my first clinic post-tx.. been years, but I'm sure I was overwhelmed as well. Duke does a lipid panel at my yearly check up (where you have to hold off on eating until after blood draw), but other than that (unless they are doing a bronch or other NPO procedure) you should be fine eating beforehand.

    Definitely a BIG welcome to the wonderful world of post-tx. It does come with complications, but nothing like coughing and hacking and nebs and O2. :)

    You are doing AMAZING!!!

  5. True confession, P. I am sort of full of anxiety now so I only skimmed this post, but from what I saw, you are still the Trooper of us all. Sigh. I will read the rest tomorrow, I swear!!

  6. Congrats on the PFTs Piper!! I'm looking forward to upwards climbing numbers. :) I hope the pred burst helps the inflammation and you find the extra awake-time helpful to get better acquainted with your new lungs and all the stuff you weren't able, didn't feel like or didn't get around to do pre-Tx! :) ~Juliet

  7. oh wow. my bad run this morning and melt down is nothing compared to what you are going through...and with a good attitude and gratitude. I'm going to go be thankful now. Thanks for the positive inspiration and sharing your story

  8. 45% WOO HOO!!! Prednisone sucks but you're a pro at it by this time so I'm sure you can pull through it.

  9. Yay for 45%! You are doing so awesome! I love your positive attitude! Your totally inspiring!

  10. Another great post! Thank you so much for sharing ALL the things that one might experience after transplant. It is so helpful to those of us on the other side still facing the process. You are a great example of rolling with the punches!