Sunday, December 13, 2009

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.


  1. Piper, I was in the same situation. My lung function at the time of TX was in the low bounced up to high 30s at times. I was resistant to everything and kept getting infection after infection. It was hard. But, the better you are going in, the better you'll do (as my team always said). I have not heard of that book. I am going to check on Amazon for it.

    Love ya to pieces! I am so looking forward to seeing a title pop up on your blog that says "I got the call" it'll happen soon! I just know it.

  2. I'm trying to be a good sponge too! I'm also most worried about waking up and fighting the vent. I've never had chest tubes, so I'm definetly afraid of the pain. But the vent's the big thing. Hope we can get some answers, I saw your post on the forums about this as well.

  3. A quick search says that having a chest tube will create a burning sensation :(. I don't know for sure. I do know lots about post-sinus surgery if you ever have a question about that!!

  4. Hey Piper l feel the same as you in terms of being worried about how l will go after the surgery, for me it was a non brainer in making the decision but now just have to wait till my next appointment to be listed. The unknown afterwards is what is scary for me.

  5. Hi,

    Lost and Found.

    After my transplant I lost one thing and found another.

    I lost my cough. It was gone. Nowhere to be found. Two years later it's still MIA.

    I found my appetite. Before my transplant the smell of food would make me nauseous. In the days after my transplant I ate so much that my stomach got clogged up and I didn't use the bathroom for 5 days.

    Now don't get me wrong, there were many things that changed for me but these are the two that stick out in my memory.

    I don't remember much pain related to the transplant. My pain came from not having a bowel movement for so long. Also the removal of the chest tubes (I had 6 (2 little and 4 big). I don't know if that is standard) was not a pleasant experience.

    I personally believe that a person's mental state is as important as their physical state going into a surgery of this magnitude. You need to be in the right state of mind emotionally and spiritually going in.

    I'm two years out from my transplant (11-26-07) and I'm looking forward to getting back to a normal life this spring when I get back out there and start looking for a job.

    Tali :)

  6. I'm 8 weeks post Tx, CF-er. My experience of the ventilator tube and waking up was unpleasant, but I expected it would be: it was the main thing I'd feared too. I remember being in the anaesthetic room and then, with no perception of time having passed, waking up in intensive care and thinking to myself "ok, I'm alive, I must have made it - I expect I'll have a tube in then...yup, there it is...this is going to be unpleasant" and it was. I started trying to breathe for myself and I remember the nurse saying breathe with the machine - if you start trying to breathe out when it's pumping air in it does feel like choking. You have to really relax and just go with it, then it is fine. I was lucky in that they took out the vent tube pretty quickly, about 16 hours in total from start of surgery to tube out (9 hour op). Be prepared for some weird hallucinations or tricks of the mind because of the sedation too. My brain made very complex music out of all the noises of the ward, machines beeping etc which became annoying, and I had vivid thoughts of flesh and bloodyness and crawling things. Quite wierd but more annoying than unpleasant in that they wouldn't stop.

    My top tip: If the pain is bad ask for an epidural sooner rather than later - I suffered really badly for a while and the epidural really really helped.