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.

13 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!

    ReplyDelete
  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.

    ReplyDelete
  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!!!

    ReplyDelete
  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!

    ReplyDelete
  5. I felt every word, i hope the second set of lungs do you proud. Im facing my first tx and soon to be listed, so many fears and many questions. The old chesnut " I have cf it doesn't have me " Ive used all my life, but now its all change.. check mate. I don't even know what i feel? Good luck!

    ReplyDelete
  6. I am, Jessica Shannon Shirley from USA, North Carolina I promise
    to share this testimony all over the world once my Husband return back to me, and today with all due respect I want to thank dr. Odenore for bringing joy and happiness to my relationship and my family. I want to inform you all that there is a spell caster that is real and genuine. I never believed in any of these things until i loosed my husband, I required help until i found a great spell caster, And he cast a love spell for me, and he assured me that I will get my husband back in two days after the spell has been cast. Three days later, my phone rang, and so shockingly, it was my husband who has not called me for past 6 months now, and made an apology for the heart break, and told me that he is ready to be my back bone till the rest of his life with me. Dr Odenore, released him up to know how much I loved and wanted him. And opened his eyes to picture how much we have share together. As I`m writing this testimony right now I`m the most happiest girl on earth and me and my husband is living a happy life and our love is now stronger than how it were even before our break up. So that`s why I promised to share my testimony all over the universe. All thanks goes to Dr Odenore for the excessive work that he has done for me. Below is the email address in any situation you are undergoing a heart break, and I assure you that as he has done mine for me, he will definitely help you too. contact him now on email odenoretemple@gmail.com

    (1) Cancer spell
    (2) Pregnancy spell
    (3) Hiv/aids spell*
    (4) Getting your scam money back*
    (5) If you want a child.
    (6) if you always have bad dream
    (7) Spell to Get your love one out of jail .
    (8) Get a huge loan without paying any fee spell*
    (9) You want women/men to run after you.
    (10) If you want your ex back.
    Contact him today for your help and you will be happy for ever. REPLY email : odenoretemple@gmail.com

    ReplyDelete
  7. Thank you for such an honest post. I am a cf spouse and always wonder what challenges we may face with transplant down the road. A lititle bit of insight goes a long way.

    ReplyDelete
  8. Thank you for such an honest post. I am a cf spouse and always wonder what challenges we may face with transplant down the road. A lititle bit of insight goes a long way.

    ReplyDelete
  9. Ankar Healthcare is a very well known name in the medical industry and often the first choice when it comes to advanced Bipap machine in India. Bipap machine is an advanced breathing apparatus that aids patients get more oxygen to their lungs

    ReplyDelete
  10. This is the right place for Auto Cpap Machine Manufacturing & Supplying, they are highly recommended brand for all your Bubble CPAP System Providers in Delhi India.

    ReplyDelete
  11. Unfortunately there are a lot of AIDS/Herpes denials on Herbal cures still out there. I did research on them after I was tested HIV/Herpes positive I was so worried am I going to die soon. I continue my search again on herbal remedy for Std, then I found lots of testimony on how Dr Itua Herbal Medicine Cured HIV/Aids, Herpes Virus,Copd, Hepatitis,Shingles, Als,Diabetes,Epilepsy,Infertility, On websites sharing their testimonies, which made much more sense to me. All the authors pronounce Dr Itua As a man with Good Heart, I pick interest in their testimonies and I contact him about my situation then he gave me procedure how it works, I proceed after one week he courier his Herbal Medicine to me and instruct me on how to drink it for two weeks to cure. I receive His Herbal Medicine so I drank it for two weeks as I was told then after 2 days I go for a test I found out I was cured from HIV/Aids & Herpes Virus, I pay homage to him 2 months ago to his country to celebrate with him on his African festival which he told me it usually happens every year. I know there are lots of (HIV)/Aids&Herpes Virus denials of Herbal Remedy movement the same few doctors and they represent a very small faction of the community. I could have died because I refused Natural Herbs Cures for so long, but luckily, by the grace of God I am alive to tell my story. Contact Info...Whatsapp Number...+2348149277967,Email...drituaherbalcenter@gmail.com/My Instagram Username...avat5634 Just in case you need someone to talk with.

    ReplyDelete
  12. Thank you for sharing some good stuff here, I want to share a testimony on how Dr Itua herbal medicine cured my prostate cancer completely with no side effects.
    Dr Itua herbal medicine can cure all sort of diseases and chronic illness, you can contact dr itua by email or visit his website to get your own herbal healing,
    Email: drituaherbalcenter@gmail.com
    Web: www.drituaherbalcenter.com

    ReplyDelete