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Showing posts from October, 2010

Patient Press Announces Its Second Poetry Contest!

The second Patient Press Poetry Contest about Cystic Fibrosis: "Putting It In Words," is now open to submissions. Winner will be announced here and on CysticLife on January 15th! "Putting It In Words: Poems About Cystic Fibrosis" – WINTER EDITION! Wanna win $20 and other prizes (TBD)*? You better write a poem!!! SEE THE Patient Press, LLC blog for full info!

Hello, New England!

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If you are checking this page because you received the wonderful CF Newswire from the CF Clinic at Children’s Hospital, Boston, let me be the first to say, Hello and Welcome!! I will be posting more thoroughly this evening, but I wanted to let you know that the poetry contest listed in the Newswire for Patient Press is currently closed – HOWEVER, I’m thinking about doing a new one. What’d’ya think? Is there interest in another poetry contest? Thanks for visiting, and see you latah! cg bp Me as a turtle.

“In Two Different Areas!!”

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I would like to share with you a seemingly hilarious video (as reported by my one-person sample viewer), of me from last night. It is extremely short. One of the things one does post-transplant is take their Pulmonary Function Test on a small hand-held device, every day. I tend to get overly excited in my post-transplant  life when my PFTs go up, because in my pre-transplant life, my PFTs were always, shall we say, sucky.  My parents and doctors generally thought that I was “not good at the test” – whatever that means – because I never “blew” consistent scores (insert blue jokes here).  Now that I have new lungs, I seem to have a similar problem, but of course slightly   different, enough to drive me a little nutso (like every other aspect of my body right now).  I can make three consistent scores on a given day – which is typically how your “real” score is calculated- getting three scores that are within I think 5% of each other or something- but I get crazy-ass different scores fr

oh hi!

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Thorough writerly post for today below, but I couldn't resist this kittenly image of my 14 year old cat. aww. ~Beth Mary ElizaBeth Peters Theatre Artist and Educator, Web 2.0 Consultant bethpeters.org

Where you at, CG?

Recently, I have not blogged a lot. So- a quick update on the medical front: I did have an additional bronchoscopy in the OR last Tuesday because the one that I had the week prior was not completed (no biopsies taken) because my new lungs were . . . . wait for it . . . bleeding! Just when I thought I put that trouble behind me. They were just irritated though, it was not hemoptysis. The pros of having my bronch done in the OR are that a) you sleep thru the whole thing and therefore are not traumatized at all; they can take a lot of time because you’re asleep and get all the biopsies they want. b)My surgeon does the bronchs in the OR , so I can get his assessment first hand on the results. c)Did I mention the part where you are asleep and then you get to sleep it off? The cons of the OR bronch are a) You have to go to pre-op screening with some random and “review your medical history” which is supposed to take 15 minutes. HAHAHAHA, all the CF patients laugh. b) You must have someone not

Cystic Gal returns to the theatre

Today I had my first official any-type-of-work-related-thing-outside-the-house. I went to a meeting with my friend C-Markie to discuss being the Web 2.0 Consultant for a theatre where I have worked for a long time as a teaching artist.  I am very excited to be involved in a season-long way with the theatre, and to have a job that I can do 99% of the time from my home! Also, you all know I love my social networking- so this will be social networking for a good aim!!  Very exciting. There is a beautiful but somewhat cheezy line from A CHORUS LINE that theatre people over-use to explain to normal people why they do what they do for a living and lifestyle: “I am a dancer and a dancer dances.” Since I’ve been involved in the theatre since I was eight, it has been particularly hard to not be actively participating in theatre in almost a year. I hoped to spend this time writing another play, but found that I didn’t have the focus (or often, the eyesight), to write a new play or work on/ pr

2 inquiries, expl. to follow

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Dear post tx homies only, two questions: What are you thoughts on the wrap surgery (aka the Nissen Fundoplification which is so fun to say or type)? Did you have one? Was it successful? What prompted you to have it- symptoms or a center requirement or preventative? How long was the recovery and what was the impact on your nutrition after (swallowing, food intake, weight)? Have you ever had a bronch while “under” in the OR so that they could take more biopsies from deep crazy areas? How far post tx were you when you did this and what was the reasoning? How are you? xo, cg