Thursday, January 23, 2014

On Looking Forward, Looking Back

**Some reader discretion advised -- tough CF topics ahead.**

It happened about a week ago.

I was just sitting here in my snug little hospital room, minding my own business and catching up on some emails when all of the sudden my eyes fell upon a message addressed to this blog's mailbox. I reached up excitedly to click open the email (have I told you all lately how much I love hearing from you? Seriously.) and there it was: the question I knew was coming. The one I was never really sure how I would answer, but that I knew I would have to eventually -- as much for myself as for anyone else, really.

Hey Piper, it's [name withheld] and I had a lung transplant several years ago. My doctors tell me now that I am most likely in chronic rejection. We are working to stop the progression of this terrible disease, but if not I may be forced to consider retransplant. I always said I didn't want another set of lungs; now I'm not so sure. How did you make this decision, and what was the hardest part of it for you? Sorry if this is too personal. I just really need some advice on the issue. Thanks.

Nope, thank you.

As soon as I read these words I flashed back to the period just after my first transplant, during the long (and somewhat complicated) "recovery" period. I was excited to finally be doing well with my new lungs, by which I mean still on IVs but breathing deeply and generally beginning to feel like Piper again. Best of all, I was feeling like Piper the Sequel -- still me, but with the added ability to do amazing things like, say, walk down the block without coughing or even (gasp!) jog a few feet. Pretty impressive, if I do say so myself.

So anyway, I was feeling pretty good, but I was still fresh off the table in a sense, and I distinctly remember telling my parents that I didn't think a second transplant would ever really be in the cards for me. Why not, asked my astonished and somewhat shell-shocked mother (note to self: right after transplant surgery is probably not the best time to bring up a second transplant surgery, especially to the mother of the 28-year-old recipient). And my answer was pretty simple, maybe even brave.

I calmly explained that I only wanted to die twice. I had been to the edge and back with my first transplant, literally experiencing the pain and torment of watching my entire body shut down one small part at a time. Although I spent most of my time focused on the positive aspects of what I could still do even with my very limited lung function, new issues, seemingly small but adding up to much more in their totality, crept up almost daily to remind me of how sick I truly was. Nightly baths eased some of the pain, but they could hardly wash off the truth that my body, despite my strong spirit and my will to live, was dying slowly and very painfully. Suffocation is a terrible fate to wish upon anyone, as is the advanced infections that so often accompany end-stage CF. And as positive as I am that we will someday beat this disease, the truth of the matter is that people -- young people, vibrant people, strong people -- still fall prey to its evil ways every single day.

Thankfully, and because of the gift of my first Beautiful Stranger, Donor Bob, I wasn't one of them. But I came close. And from that time on I decided that I would only die twice -- the second time would be my final goodbye to this phase of existence. I was not yet 30, but I was at peace with that decision for myself.

Fast forward 3 years, and things were…different.

When I decided to pursue a second transplant, it was largely because my life, in the time between my first surgery and my diagnosis of chronic rejection, had changed. For one thing, I was in a new relationship, and I knew I wanted to stick around to see where this one went. For another, I was increasingly comfortable in my own skin as an adult and felt more at ease with the idea that I was not in control of every little aspect of my health, nor did I necessarily need to be. The idea of dying didn't scare me as much as it once had. And, of course, I felt the very natural, very human resistance to the notion of "giving up." A part of me, I acknowledged, had been training my entire life to fight against illness, and it wasn't about to stop now. And so I began the process of trying to halt my chronic rejection, but also began mentally and physically preparing for the day when I, too, might have to face the choice to relist, again, for the precious Gift of Life. And I knew that, should that time come, I would ask God once again to bless me with new lungs, and then I would work my butt off for them, even if it mean dying a whole other time over. The rest, I knew, was somewhat out of my personal control.

Look, guys, transplant: it's not for wimps. Neither is life with CF, for that matter. I've honestly never known a group of patients who, for their entire lives, are asked the way we are to endure pokings and proddings, hospitalizations and "procedures", invasions of privacy and personal space, treatments and medications and daily battles just to keep all the rest of it at bay -- and that's just for some of our "healthier" patients. But at the end of the day, most of us don't have much of choice besides being strong. What others call "inspirational" isn't even an option for us; we act that way because we have no other choice if we want to survive.

And so I took that second leap of faith. And miracle of miracles, after a brutal battle, it paid off. I can't even bring myself to write yet about the road I took to get to my second transplant, but I can tell you this: in retrospect, it was worth it, every step.

When it comes to life -- or death -- with this disease, there are no "right" answers to the tough questions like "should I get a second transplant?" What there are, however, are answers that are "right" for me, or for you, or for anyone else who might be struggling with the "what ifs" and the "what fors" of decisions most people will never even have to make in their lives. It's not an easy position to be in, and my heart goes out to all of you in that same boat for whatever choice might lie ahead, but my answer is always going to be the same: it doesn't matter what I chose or why, because this time, guys, it's all up to you.

And I wish you nothing but peace, love, and light along your journey.

4 comments:

  1. Wow! Great post... I can totally relate to how you felt after your first tx. I said I would never do this again as well. Im not in chronic rejection, but as time has passed, its been 19 months, I can see my feelings changing. Life just happens and yes we are born fighters. I can't imagine just giving up. Well, I wish you all the best with your new set of healthy lungs!

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  2. Piper, thank you so much for this post. My granddaughter, who is 7, has CF. She is vibrant, intelligent, fun-loving, just the sweetest little girl you could ever want to know. She's also tough and a fighter. Your statement, "What others call "inspirational" isn't even an option for us; we act that way because we have no other choice if we want to survive." That just smacked me in the face. It's so true.
    I had an appointment with a doctor for an endoscopy, and she was asking me about my family. I told her about Ella and CF. Her comment was "well, CF is becoming more of a chronic disease these days." Well, it is chronic, but also terminal. I wanted to scream at her.
    Thank you for the awareness that you bring to the community. I hope you and Nick have a long, smooth journey ahead of you. I know that Ella' future is brighter because of all the forerunners, but when the day is done, it's still a horrible, terminal condition that takes young people away too, too soon.

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  3. Piper, you are truly a gift as an individual in every thing you do. Your words and how you present all of this to the world is something only very few have the power of doing. There is a reason god and your donor gave you another shot at life. I think you know more so right now that you are destined to inspire so many people with CF and everyone you meet. I look forward to reading more of your future journey through life and spreading the good word. One of these days I would love to meet you in person. THANK YOU for all you do cyster!!!

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  4. Wow thank you for opening up about such a sensitive topic. I am still wrapping my head around one transplant but you have such a great perspective!

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