Thursday, August 20, 2009

Logistically Speaking

Have you ever noticed how sometimes in life things just work out beautifully with absolutely no advance planning?

Like that Sunday 10 months ago when I was pulled from a nap by my darling sister's phone call and the simple phrase: "Get up and get dressed because I think I've found your future mate." Not always the most welcome words in the world when you're lying there with smeared mascara and bedhead, but as it turns out, 30 minutes later I was standing before a 4-month-old Sampson, who was deftly attempting to demonstrate his unbelievable cuteness by chewing on my sister's fingers. Okay, fine, so maybe biting isn't a preferred human method of flirting (although maybe it should be?) but it definitely worked on me -- hook, line, and life-changing sinker. And while I never expected to bring home a puppy that afternoon (and in fact had vowed never to have anything resembling a shih-tzu after a rather traumatizing run in with my childhood nanny's blind, deaf, and very snarky "puppy"), I couldn't be happier with the long-term results. No planning, no advance warning, and possibly the best outcome ever.

That moment aside, though, I've learned that there are certain experiences in life that DO require preparation. I'll be the first to admit that I've sometimes had to learn this lesson the hard way -- such as the time I failed to prepare at all for a science test in 9th grade and became quite possibly the first cystic in history to get a nearly failing grade on questions about the "biology of human organs" (oh, the irony!). Or that decision I made to wait until the very last night of the very last day of my college experience to even try and pack up my rather large bedroom and everything else I'd accumulated over two years of living with the best housemates ever. Good housemates, yes. Useful assistant packers in a crises, not so much. In other words, I've had a few examples of poor planning in my lifetime, and I hope I've learned from them.

And then along came transplant.

Okay, I am a lot of things, but (lousy grade on 9th grade Bio test notwithstanding), I am generally NOT stupid. So it's not as though I was expecting transplant to be something I could waltz right into with zero prep work or planning and wake up 8-12 hours later with new lungs, new breath, and everything totally organized to start my new life. And any delusions of simplicity I actually might have had in the beginning were quickly (and rightfully) shattered by my wonderful but very straight-talking transplant team. I was told I would need to attend educational seminars, schedule and complete all "routine maintenance" health appointments (eye doctors, dentists, etc) and immunizations AND receive from each doctor a letter of clearance, organize my support team and living situation to be ready for post-transplant living, and of course work on gaining weight and maintaining my exercise routine to be as healthy as possible for the actual surgery. This, of course, in addition to the three full days of outpatient testing I completed in August 2008, many of which I have subsequently repeated just so that everything is as up to date as possible.

And when you think about it, that's a lot of advance planning for a surgery that you can't really plan AROUND at all. In other words, I can't plan when the call will come. I can't plan which of the three amazing surgeons at my center will be on-call the day/night I get lungs. I can't plan to be back on my feet or back at work on any specific date. I can't tell my housekeeper the dates when she'll have to take Sampson in advance, and in fact I can't even tell her how long she'll have to keep my beautiful boy, since I have no way to plan how long I'll be in the hospital. It's as though the lack of ability to plan has mysteriously morphed into a compulsive need to double-plan just so everyone's as prepared for unplanned chaos as possible.

Um, yeah. It's really, really fun and exciting over at my house right now, let me tell you. Fun, exciting, and relaxing.

But okay, fine, I can live with a little chaos. Just not too much, which means that, having finished the first list of "planning to-dos" (pause for a major pat on the back here) given to me by my transplant team, I'm moving on to my own personal list. And I'm suddenly discovering that there's still a LOT to be done. Over the past week, in the frenzy of being listed, I've had to come up with ways to notify old friends -- some of whom I'm not really in touch with much anymore but know would want to be updated about something this major -- about the transplant, put together a ready-made listserve of email address for people (family, close friends, etc) who want to be notified of things as they happen once the call comes, and set up a place (probably a website of sorts) for people who just want the more occasional updates to be able to find and share information during the surgery and recovery. I've also had to consider what I want to bring with me to the hospital (for my stay that could be anywhere from 8 days to, well, as long as it takes), and what my family might want/need in the waiting room. I need to plan how I can best stay active and engaged and social while on the list without wearing myself out and over extending, and I have to make sure everyone knows that I might have to drop these commitments at the drop of a hat to go get the transplant. I've most recently moved on to planning out tough conversations, including finishing up my advance directive and other things that, as a lawyer, I just can't not think about. And finally I'm working on a personal goal of being able to walk 2.5 miles at 4 MPH without stopping (or dying) at the time I get called for surgery. Because a wise friend of mine once said "if you walk into a transplant, you'll walk out of it." And I figure she ought to know, since she walked upright into the O.R. before her double-lung and liver transplant. Yowza.

I gotta admit, I kinda wish finding new lungs could be a little more like finding my dog. I mean, how awesome would it be to be peacefully dozing on a fall weekend and have my sister call up with an adorable (and feisty!) pair of perfect new lungs for me? But I have a strange feeling that's not how it's gonna work out this time -- and if I do get that call, I think I might have to commit my wonderful sister, so that wouldn't be good either.

But if I'm really truly honest -- and when am I not? -- I have to admit that there's a part of this process that is actually kind of fun and exciting (in a very "man, I wish I didn't have to do this" kind of way). I'm learning a lot about myself and my family, I'm reconnecting with some really old friends, I'm getting to see first hand just how wonderful all these people in my life who have come out of the wordwork -- in fact, sometimes out of the pretty distant past -- to support me truly are, and I'm pushing myself in ways I didn't even know I could be pushed.

In other words, I think I'll have to wait, and plan, and deal with the uncertainty of not being able to control everything when it comes to the biology of lung disease and human organ transplant -- and hope that at least this time around I can earn a passing grade!


  1. I know all to well what you are going through...I feel like I have been in a permanent state of limbo the last 15 months since I was listed. You can't really plan anything and yet you have to always be ready for something. I think you are handling everything great I was all busy getting everything in order too at first but eventually the "frenzy" feeling will loosen up the longer you have to wait....which hopefully for you isn't long! :)

  2. I can relate in so many ways!

  3. Great illustration for what it's like to be listed...are you considering putting any bloggy friends on that e-mail list serve to be update as it happens? If so, I'd love to be included.


  4. Hi Piper! Thanks for the comment!

    I actually took the name from the person who gave me my furry little friend. Bailey was really popular at the time and I liked that, but wanted to be a little different. And Beatty was just HIM! :)

    I loved your post. I remember that limbo of planning but not planning very well.. You will see though.. all of these details will work themselves out and people you never imagined who would reach out, will surprise you. We were 6 hrs from our home and pets and it all worked out... just as it will for you!

    lemme know if you have any ??'s on my experience and I'd be happy to share... Just like you, I thought to myself, "what do I even bring??"

    Best of luck to yoU!

  5. I really like this post. Very good illustration!! I tried to be as prepared as well, but when the time came, it really didn't matter! I had a special bag packed in my closet, with instructions for my parents, things for me to do while in the hospital, etc., but I guess when you have to leave immediately and fly to California and on the vent and unable to speak, the bag doesn't come in handy :)

    I think you will be more prepared than you think!! It's kind of exciting like you said...but a little nerve-wracking too!!! I'll be praying you walk in to the transplant and walk out feeling GREAT!

  6. I bet it is so hard not to know all the details or have some sort of control.

    There's a lil something on my blog for you :)

  7. Piper - I had no idea there are so many things to think about and prepare for and get in order. It's exhausting just thinking about it. but I'm sure you'll go at it with gusto just like everything else in your life. :D Thanks for a very informative blog entry! ~Juliet

  8. Piper your blog is my absolute favorite 'cystic' blog to read you are very honest and seem to have a great way of balancing things and I just wanted you to know.