Friday, April 30, 2010

Ten Things I Don't Want During My Transplant Journey

Remember how I started writing this blog, "as a tool to manage my anxiety?" Well, of late with some of my bloggies getting their Big Call to transplant, I have been thinking about some things that I have been anxious about regarding transplant for about . . . 19 years. Here goes!

Ten Things I Don't Want During My Transplant Journey

1. Pictures takes of me in the ICU, wearing a hospital gown, in various states of mental/physical awareness, or to otherwise prove that I am alive via the internet. Some people are totally comfortable with this, and I think that's really cool. I was thankful to view CF Steph's transplant pictures as they were posted, to better inform my future. However, I am a more private person when it comes to how I look while I'm sick. You all know I'm an open book about my personal feelings, but pictures of me, that's another thing. Think about a so-called normal person the day after a heart attack or stroke, sitting in the ICU, barely aware. People don't expect s/he to pose for a snap to memorialize it as a great moment, do they? My best tx moments will come a few weeks after the surgery. Not when my hair is greasy, I'm in pain, and I'm high as a kite with no underwear on. (As a general rule, I recommend refraining from taking pictures when people don't have underwear on. I have never had a reason to articulate this guideline before, and yet, I feel now, these will be words to live by.) I digress: Hear ye, hear ye, no one has permission to take my picture after the transplant until I am well-enough to take my own damn picture, which we all know I am a huge fan of.

2. Dramatic conversations while I am in an altered mental state due to illness or prescribed medication. People have an impulse to tell you personal things when you are in a compromised state, because they are worried about you and have the idea that they have to, "get it all out," right then and there. While I understand this human instinct, it can create an unduly emotionally stressful environment. One challenge many transplant patients face is that when they are in the middle of the most stressful life event they've ever managed, they are expected to manage the experience of those around them. Perhaps the joke's on me- but I can't do it. If you want to tell me something personal, I am available via email, phone and text right now. Don't save it 'til I'm trying to meditate, breathe and talk to Jesus. A simple, "I love you," will suffice in these situations. No need to apologize for being mean to me in third grade, or for breaking up with me in college.

3. Coaching. This isn't football, I don't want anyone telling me to "tough it out," "toughen up," etc. Unless you're in the bed next to me and your chest has staples in it too, I don't want to hear any cheer leading. After transplant, I will have moment of euphoria, fear, gratitude, and pain. I will need to support and acceptance in each of these phases.

4. Touching. Other than the infection control protocol that is set out after transplant, everyone should please know that I'm already sort of a "don't ask, don't touch," type of person when I'm in any state other than totally healthy. If I want a hug or a hand-hold, or even a cuddle, I just go ahead and ask or initiate. One of my biggest anxieties in the medical environment is the nearly constant, very personal, touching. It takes all my strength not to backhand the people who are paid six figures to do so, so only imagine how I feel about the bourgeois.

5. Comparisons. Transplant has come a long way, baby. Every center has its own protocol and every patient is different. I already know that I am an unusual patient (insert mean jokes here). I don't want to hear about how this person or that person was on the vent for how long, how that patient was up and walking by x o'clock, or how s/he walked so far! I will be doing the best I can based on my team's recommendations, and I don't want to hear it if you secretly think, "oh boy oh boy, I was hoping she would be ready to run the marathon by Sunday!"

6. New old friendships a-croppin' up. Ok. If we're not in touch now, like you don't know my phone number or real address, don't write me a weird email about how we're so close. I've heard that a lot of people work out their own issues with health/mortality when literally anyone they know gets sick. Send me a get-well card, but don't try to get up in my face.

7. Memorializing / Infantalizing Me. Whoa, d'ems some big words d'ere, cg! It really bugs me out that during illness, people revert back to treating patients like they are children, posting childhood photos, calling them by nicknames of yesteryore-- did I just make up that word? I'm not cool with that. I'm almost 30. You can call me Cystic Gal, not Cystic Gal"ie" or "My little Cystic Gal-aroo" or whatevs. (exceptions to immediate family only and you know who you are). Also, building virtual memorials to the person. I'm gonna live, dudes! I have no fear of another outcome. Save the yellow-tinged 80s photos for a way future date.

8. People reading too much into my writing. I'm required to see a shrink as part of the pre-tx process, most centers require it. Let him/her do all the analytical razzamattazz. This is a unique time in my life to observe and experience life in a way I never have, and some never do. I have found it to be a highly creative time. Back when I was an English teacher, I taught several lessons about the difference between the "speaker" of a poem, and the author. I am not always the "speaker" in my creative work.

9. People asking questions that would be inappropriate in other environments. So, like, unless you're licensed by the state of X or X to ask me about poop, pee, and other interpersonal topics that I won't even list here, totally do not ask me about these things. Yuckos. What's worse, I might answer. Double yuckos.

10. People worrying about me.
Woah, that one is easier typed than done, I know. But I have great faith that the surgery will go well, my recovery will go as expected, and I will be back on my tiny little feet in no time.

Thanks for all of your support! I know these requests might surprise some of you, but I ask you to be understanding and know that following this list will create much less anxiety for me!



  1. OK, printed and in my back pocket. In the mean time, a fresh dance video is in order. With CysticMom too!

  2. I love this! What a great idea. You will see no pictures of me with tubes because I didn't want any. Why would I want to remember beign like that? I have always been comfortable in my skin and sickness so the scares and tubes way my way of showing everyone what "we" go through. I had a really hard time letting people take pictures of me with my O2 on for a long time because I wasn't ready to accept I was in that phase of my CF. I will try not to do too much "cheerleading" but it if I do it is only because I know you can do it and it will only be positve! No negativity allowed during healing. No matter what center you get your transplant at you are in great hands! Thought are continously with you!

  3. You got the power, CG! How very cool of you. The theme seems to be a general request that people not project their own issues onto you - a very reasonable request. Also, photos in the hospital? Egad.


  4. Excellent post, CG.

    I do have a few comments. Worrying about your looks again by ruling out the pre-transplant no-underwear photo. How do you ever expect to grow your male readership if you going to censor the best pictures. You're posting the wrong bunnies on your site. More transplant buns! Can we start a fund to pay someone to take that photo of you?

    I can see the head doc is having no influence on you. :-)

    As I still consider you an English teacher on an extended break, you probably also mentioned to your students that once a piece of art leaves the artist's mind and hands, the public can interpret it the way they want to interpret it. So, perhaps there are aspects of the work you can't see. Perhaps?

    Finally, this site is really pink. I'm not sure you've noticed that, as you may be color blind. How about some blue or orange? Bronco colors would suit it well.

    Wishing you the best as always. I have to go now because I feel like looking at pictures of small fuzzy animals.

  5. Love it! The 'no underwear-no photo' rule is so funny! I think I need some post-transplant guidelines myself...

  6. I am totally there with you on rule #1!! I wear O2 24/7 but I hardly ever take a picture with it on..I don't know why I just don't like to. Anyway...this is my first post on your site!! So Hello! :)


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