Thursday, March 5, 2015

Long Way Home

It was late afternoon and I was sitting in the hospital cafeteria, along with about 20 of my fellow hopeful lung-transplant candidates. I remember it being hot, an Indian Summer in the concrete jungle, and the constant whir of oxygen concentrators filled the space with an added sense of the surreal. We were here, together, sick, and ready to learn about the science fictionesque process by which one of our most vital organs would soon be replaced. We were excited. We were scared. We were confused. And man, were we ever ready to put this chapter of our lives behind us as the speaker for that day made her way to the front of the room.

The talk was titled "medical compliance post-transplant", and it focused on the pills, treatments, and various routines post-transplant patients are required to incorporate into their daily lives after the surgery. The nurse brought out each pill in turn, explained its purpose and use post-tx, and then noted how long patients would generally spend on any given medication. Not surprisingly, her answer for most of them was "for life." Post-tx patients can never go off anti-rejection meds, of course, because our bodies are preprogrammed to attack any foreign object, and the lungs in my chest will always contain my beloved donor's DNA. But because of anti-rejection pills themselves carry with them a whole slew of other side effects (lowered ability to fight off infection, low calcium levels and impaired bone density, partial resistance to insulin, and many others) we often are forced to take lifelong pills to help cancel out the other pills. Sound a little confusing? Well, it can be. The miracle of modern science is that we are literally able to save each other as our final gift of life. The downside is that we haven't quite caught up yet to the point where that gift can be fully accepted by the body as part of ourselves. And that, my friends, is why transplant research continues to be so important -- for the donors, for the patients, and for the world.

As we listened to the nurse explain all of this, I could see the eyes of some of my fellow hopefuls grow wide and fill with anxiety. Eventually one of them, a man of about 55 years old who was there with his wife and daughter as his caretakers, rose slightly out of his seat and said the words so many of us were thinking:

"Wait a minute, I thought I was getting a transplant to CURE my lungs? Why is it so much work taking care of them after?"

The nurse didn't miss a beat as she answered:

"For many of you, transplant will be a godsend. It will save your life, literally and figuratively -- it will allow you to keep breathing, but it will often also allow you to rediscover your self. The one who loves baseball, the one who jogs on the beach every morning, the one who can't wait to book the next plane ticket. Those people you were will come back into your life. Welcome them home.

But to call transplant a 'cure' is perhaps a bit misleading," she continued. "Transplant is a trade: giving up a disease that is killing you for another disease that carries with it medication and risks. Post-tx your disease becomes your immunosuppression. You are left vulnerable (not weak) and these rules are the best advice we have right now to keep you safe. For those of you with CF, as you know, you will also still have CF throughout your body, just not in your lungs. No one said transplant would be easy. I will tell you that everyone I have ever asked has said it was worth it."

The room was silent but for the hiss of oxygen. Her words, so raw and honest and compassionate and TRUE, echoed in all our heads throughout the rest of her talk. It was then, as I was standing to go and gathering up the tubing from my own O2 concentrator, that I made a promise to myself.

Whatever this "cure" threw at me, I was going to take it with as much grace as I could muster. Whatever the risks, I was in this for the long haul. Whatever came from this transplant, I would welcome it home. 

Flash forward 6 years, two transplants, and countless little (and not so little!) "bumps in the road" and I am here to tell you without hesitation: it has been worth it. I thank my donors with every breath for the experiences they have given me, from my marriage to watching my nephew take his very first breaths. I carry those moments, and so many more, with me always, so that when my "new" disease of immunosuppression and all that comes with it rears its ugly head, I can remember why I chose this road in the first place.

This past Wednesday, one week ago, I had a small surgical procedure to remove some high-risk cells from my body. Unfortunately, cancer is one of those not-so-fun risks that gets higher when a patient is chronically immunosuppressed, so any possible sources have to be caught early and treated aggressively. In my case, doctors were able to use a combination laser and excision treatment, and the good news is they are extremely optimistic that the surgery might be the only treatment needed. And as strange as it is to know I live in a world where "possible" cancer treated with a surgery could be considered "easy" -- the fact is that I remain incredibly lucky. To have lived long enough to experience these side effects, to be healthy enough to face them and recover, to have so many people by my side who are there for me and doctors who care enough to listen and know enough to get the job done. To have this life, with all its crazy side effects and twists and turns and miracles -- well, that is the gift that truly brings me back to myself, over and over.

And I will welcome her home. No matter what. 

6 comments:

  1. Piper, A moving and eloquent account: you must collect and edit your postings and put them in a book from which so many would benefit! XOXO, Your godmother

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  2. I am also so glad that you got to come "back home" Piper. You have a way with words and there is no doubt that your journey has been extended to provide insight and comfort to others. Happy to hear that the "small" surgery went well.

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  3. Piper, I was pleasantly surprised to check in on your blog and find a new post. As usual it was lovely and hopeful. Your writings are such a gift for me; they always make me feel better, comforted or more informed.. I received my transplant September of 2010 and now retransplant is on my horizon, so I feel like I'm sort of following is your footsteps. Hope you keep posting. Barbara

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  4. Hello Piper,
    Sounds like grace is certainly part of all that you do. Thank you for blogging.

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  5. really nice post!
    http://stm.sciencemag.org/content/7/276/276ra27
    Some newest advance in CF research...

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