Great Expectations

It's kind of a rainy, dreary day in New York City -- the kind of day made for curling up on the couch with a warm puppy, maybe a mug of hot tea, some nice music in the background, and a good book about love or adventure or a land far, far away.

Or, you know, about illness and double-lung transplant. Yeah, that works too.

As you might have guessed, this morning found me enjoying the rain by delving into some of Tiffany Christensen's Sick Girl Speaks, a patient-guide for navigating illness and transplant written by a fellow cystic and two-time transplant survivor. For those of you who know the book, it's not really a narrative memoir so much as a series of short vignettes/anecdotes dealing with various aspects of illness, transplant, and recovery (both physical and emotional). I have to admit that I haven't read the book straight through cover to cover yet, but I find it really helpful to read certain passages, especially those sections dealing with her transplant, for obvious reasons. And this morning my eye was caught by a particular message involving expectation -- basically the author suggests that recovery is likely to be smoother if the patient's expectations are in line with the reality of his/her situation. If you're unprepared for the pain you experience post-surgery, for example, you may be more fearful that what you're feeling is not normal, or that your recovery is not going as well as it should be. And for some reason, this rainy morning, that observation really struck a chord with me.

Lately I feel somewhat like a sponge about to tackle a particularly greasy and nasty casserole dish (bear with me here because I promise this simile has a point). I'm about to face something that I know will be incredibly challenging, and my little sponge brain has decided that the best plan of attack is to soak up as much water and soap (in the form of information and experience shared by others) as possible. The hope being, of course, that once I actually take the plunge, this information and experience will somehow help me better prepared, will help align my expectations with reality in a way that makes my recovery easier and less scary.

And for me, that's really the scariest part: recovery. For some reason I think I'm okay with the surgery part -- after all, my main job there is just to sleep and let my amazing surgeons do their work. It's the waking up that both terrifies and excites me. I have so many questions that seem impossible for my doctors to really answer. How will I feel when I first wake up? Having never had a chest tube or a breathing tube (while awake), what sort of sensations should I expect? How long will it be before I feel more alert again? Should I expect to feel much worse before I start feeling better? What are the emotions that most people go through in the days/weeks/months following such a major surgery?

This is probably somewhat complicated by my unique situation of being a CFer with slightly higher lung function who is nonetheless very high on the list. My transplant has much more to do with my infections, which are super frequent and scarier by the month, it seems, than it does with how I feel on a good day. On a good day, I don't need O2. On a good day, I can still run around and feel relatively active. In short, on a good day, I can breathe. So what will transplant feel like for someone whose old lungs wouldn't be so bad if they could only stay healthy? In other words, what will transplant feel like for me, which I know is both the million dollar question and the one that no one can really answer. Because no matter how much water I soak up, I know in the end that this is going to be my personal journey, and that perhaps the most difficult expectation to manage of all is the one that looks for hard, concrete facts instead of allowing for individual variation.

Still, you can't blame a girl for trying, right? So consider this my plea to all my wonderful post-tx cysters and fibros (and anyone else out there, including non-CFers) for whatever information you're willing to share about your immediate post-surgery experience. Or to put it another way, what is the ONE THING that you experienced post-tx that you wish someone had prepared you for ahead of time? And to make it interesting, if anyone out there pre-tx (or just thinking about it for down the road) has some additional questions or is thirsty for some "water" of their own, please feel free to share here and maybe we can all get some answers.

As for me, the one thing I never dreamed of for my transplant experience was that I would be in touch with so many wonderful people who could help me and share as much guidance, encouragement, wisdom, and strength as all of you have. And this is one instance in which defied expectations is definitely a great thing.