evaluating a transplant

Today, Day 1 of my liver transplant evaluation, was quite a day. I was poked–4 times. Prodded–by 3 doctors. I purged every question I could think of, and 22 vials of blood, and every single drop of carbon dioxide I could from my lungs. I signed my name and repeated my birthday about 10 times. I, and my family, spent about 4 of the 7.5 hours waiting. I thought about my mortality, and the future, and what I want from my future, and every single permutation of things that could happen in my future.

Now, as I lie here on a bench at school (as I was when I wrote most of this) and think about the gravity of this decision, and how much I want to cry, and how relieved I am to be done with today, I am greeted with this view:

Things can’t be so bad with this view.

A lot of the things I think about and worry about with a potential transplant, whether it’s the right time, whether I will have to get another one at some point, whether my cancer will come back, whether my life as it is now is worse than how it will be post-transplant, whether I will live longer with a transplant than I will with cancer, whether I will be prepared mentally for the horror that is surgery, what it must be like to get that call… as my dad said so appropriately today, a transplant is like moving down a long hallway where the doors lock behind you as you walk along.

But right now, as I look at this view, all the doors are still open.

The door to a normal life is the only one that is locked. My liver isn’t functioning so poorly that my skin has turned a bizarre shade of yellow. I saw a person who was that bizarre shade of yellow in the waiting room today. I’m young–at least 20 years younger than every other person there for a transplant evaluation today. I felt very much like I didn’t belong. I’m usually happy–I spent most of the day, before I got pensive, giggling with my sister and laughing with my parents. I’m relatively fit and I eat well and i’m not addicted to anything and i’m “healthy” in every other way (unless they find something else wrong with me while they’re doing all these tests).

No doctor can tell me whether this is the right decision. No fellow patient can tell me whether this is the right decision. My family can support me, and they do, and I am so grateful that they are here for me when I need them, but they can’t tell me whether this is the right decision. But I, at least, appreciate the weight of a transplant now more than I did. The hour the nurse coordinator spent scaring us worked on me. She made me feel like a kindergartner. She made me feel like I would be tempted to drink, smoke, and do drugs if it weren’t for her. She made me feel like i’m not responsible about showing up for appointments. She made me feel like I don’t answer my phone or have it on me pretty much all of the time. She made me feel like I made my liver go bad by the bad choices I’ve made. She made me–and everyone else, I think–feel stupid and unworthy of a liver transplant.

OK–maybe I wasn’t the target audience. And maybe she was overly harsh and grumpy and condescending. But this is still a big deal, whether or not i’m at risk for not being a good steward of a new liver (I don’t think I am). I would be getting a liver that could save someone else’s life. The woman with yellow skin, for example. I could also be saving my life. Perhaps more meaningfully, I would be getting a liver from someone who lost their life. A someone with a life, with important unimportant things to do like me, a someone with family and friends who love them. A person with a big, healthy liver who dies can, in fact, save two people’s lives. These are not trivial factors to weigh as I make this decision.

Strangely, it didn’t seem like the doctors thought this way. Only one of them had read my chart before they walked into the room to see me. None of them tried to hide the gaps in their knowledge. They looked at me with blank eyes, like they had seen hundreds of other patients just like me. I felt like I was on a liver transplantation conveyor belt.  They asked when I was diagnosed and if I had a surgery before and whether I was still being treated (confusion, when I said yes), and, as an afterthought, whether I had any questions.

I have about a million questions. What is the right answer?

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7 Responses to evaluating a transplant

  1. Olaina says:

    Choose life! You are amazing and totally worth a liver (pun)! More later…

  2. NB says:

    Lindsey,
    Thank you for your blog. I just had surgery to remove a carcinoid tumor from my small intestine. Before the urgery, all the doctors assured me that it hadn’t spread, but it has. I have no idea what the future holds, if I m making the right decisions, etc. but it is so important to me to find others battling this disease nd hear hei stories.

  3. Nick says:

    Wow Lindsey, what a post. Thank you for sharing your experience with us.

  4. After reading this post, the first thing that comes to my mind is: You are such an inspiring woman, Lindsey!
    Your words and life lessons travels all the way down to Fortaleza, Brazil.

  5. Tisa says:

    I completely understand the blank stares! I had a neuroendocrine cancer and subsequent liver transplant. I’m glad I did it.

  6. Matt says:

    Carl Jung once wrote that to look outward is to dream

    To look inward is to awaken.

    Your vision will become clear when you look into you
    heart.

    You know what you need to do, Lindsey!

    Remember…feelings are like the tides…they come & go.

    Draw your line…and take a step forward in faith.

    Life is a journey..embrace the mystery.

  7. Like all of the others reading this blog, I continue to send you lots of love and strength.

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