Stranger than Fiction

hi everyone.

i'm awake and at home - discharged directly from the ICU around 10 am this morning after coming in from the OR around 2:15 am. i will try and explain what happened (although it's hard for me to wrap my own head around, i fully admit!), but please keep in mind that much of this is what lawyers call "hearsay" -- meaning i heard it from someone who heard it from someone else, and possibly the line goes back even further. suffice it to say that it went more or less kind of sort of like this:

the harvest team had already examined the lungs and was ready for the operation, and the lungs were very close by to columbia so i had to be put out before transport so i could be ready by the time they arrived. donor hospital made a last minute decision to allow the liver harvest team to resection the liver FIRST (contrary to most every hospital which allows lungs and heart to come out first). somehow i still got put under b/c the liver operation was supposed to take less than an hour. liver operation took 4 hours during which time the lungs (and i believe the heart) were lost due to no O2/blood, or possibly b/c of debris or a clot from the liver.

they don't know all of what happened. after it all the lungs never even made it to columbia. one doctor said he believed that it was the first time in 15 years someone at col pres has been put out only to NOT receive their lungs. almost everyone who treated me was crying. i awoke and asked if i got new lungs and they very gently told me no -- after that i was so confused i don't really remember much. i know i asked for my family and was told they were on their way. i know i felt a very weird sense of disbelief and numbness. i think i was just so focused on breathing at that point too that nothing else even really registered.

i'm still confused. i trust god and know that this must have been right, but how? and at the same time, i have NO FEAR about this surgery anymore. is that weird? it's also true. i've done my part. i've made it all the way to the OR and i've endured it all and i've felt that moment of being put under ready to give up my lungs and receive new life. true, it didn't work out as planned, but i also know that i did it. the parts that were in my control, at least. and that's all i can ask of myself, so i know i can do it again.

** NOTE: PLEASE understand that this experience is crazy out of the ordinary -- even bordering on the absurd. although i recognize transplant for the deeply personal and individual decision that it is, please think long and hard before allowing a fluke like this one to put you off of the concept. if i had to go through all of this twice over to get new lungs, i would. i am happy to correspond with anyone who wants to talk about this, and contact info is to the left.**

so here's what i know:
1) i still have my CF lungs -- and NEVER, EVER let ANYONE tell you that CF lungs aren't amazing. because mine survived intubation and general anesthesia at a time when their work should have been over, and they RECOVERED enough to let me come off the vent (apparently without any incident) and make it home. thank you, lungs. i will miss you when our time together is over!

2) i have a transplant team willing to refuse bad lungs even at the last moment, and to face me and look me in the eye to tell me their decision. they are compassionate, caring, competent, and -- above all -- discriminating when it comes to PERFECT lungs. i am so grateful that the first (cognizant) words that i said to my surgeon were "thank you for not giving me bad lungs." he laughed and shook my hand. i was serious.

3) i have a CF doctor with enough insight to get me on the list and to make all this happen when i am still strong enough to endure all these dry runs and even this -- the ultimate in "damp runs" as i am calling it. again, forever grateful. i will always, always be an advocate of working hard to delay transplant, however i will also always shout from the rooftops the importance of going into this process STRONG and not too sick or emotionally fragile to function. this is without a doubt the biggest challenge of my life, and to be able to continue to live through it, and live with it, is a blessing beyond words.

4) i have tiffany christensen's book sick girl speaks, which is the ONLY point of reference i have found to date of a similar experience. i am so grateful to her for putting her experience out there for others. i thought about it and told my mom her story as i recovered in the ICU this morning.

5) i have faith. god is in control of when i get lungs. the universe is unfolding exactly as it should.

6) i have so much light from all of you. i love you all. thank you.

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.