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!!!
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.
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 from day to day. Grr. So sometimes I blow a really high score and then I think later that it was a fluke because I can’t do it again for 2 weeks, and similar with the low scores.
So, last night I had this really high score (for me as I rebuild) of 2.51 FVC and 1.88 FEV1, and then today the numbers went back down to 2.29 and 1.77. Grr.
I want the points. All the points. And though that represents about a 4% difference – it is annoying as certainly tomorrow it will go back up again.
Let the record show that today was also a prednisone step-down day to 10 mg /day – that’s my pre-tx dose!! SUPER. Next step- 7.5mg!!
Okay, latah playahs,
cg bp
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
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 only drive you to and fro, but generally babysit you the rest of the day because you were actually “under” for the procedure.
c) You have to wear an ugly hospital issue gown.
d) You are more sore the next few days because of item a under “pros” and item b under “cons.”
BRONCH RESULTS: No rejection!!! Yahoo! This means that my body is totally accepting my new boy lungs that I now call "boyfriend." Teeny Tiny (+1) infection with psuedomonas, which was expected as nearly everyone with CF carries an active infection of psuedomonas, as it is a naturally occuring bacterial that doesn't normally live in "normal" lungs but is like dessert for CF cells (they really like it). I will likely always have a low level psuedo infection, but that's alright and its why I take a few of my twenty pills a day. They did find that my upper airway above the anastemosis (*area connecting my old body with my new lungs) still had a lot of secretions, but I have since found out that this is common among CFers because those cells still produce mucus like nothing has changed. The thing I need to do is get better at clearing that area, (clearing my throat) and for that we...
NEED MY DAMN STERNUM TO HEAL SO THAT BIG COUGHS DON'T HURT!
SIDENOTE: My surgeon has confirmed that "ooh . . . something . . . is different" about my sternum, but he is "not really worried about it," and we can go in and change it if I am still aesthetically displeased in like 6 months. AND - unrelated- I get to stop my Lupron shots!!
OKAY – other update in a nut shell:
I was emailing with one of my best online CF buddies, and wrote to him about how I have not felt a lot like blogging:
“I have not been feeling much like blogging lately. Now that literally everyone I have ever known is reading it (family and old friends and colleagues), it's just not as fun as when mostly CF people read it. I feel like I can't really write all the stuff I wanna write because all the randoms will start to worry about me or think I'm a-losin' my mind.
I might invite Fox over to write a post. HA.”
He responded with this:
“ Regarding your blogging, are you sure it's because everyone is reading it or is it because your life has changed and now it's not as interesting to do? Does the blog represent your old life, pre-transplant? Have you figured out what it needs to be to make you happy?”
I have not figured out much in response to this question other than to know that my usually anonymous friend is quite wise. I am not sure where the blog should go or if I should just power through this new knowledge that more people I KNOW, or shall I say, MOST OF THE PEOPLE I’VE EVER KNOWN are reading the blog- and just keep truckin’. Who knows? What do you think?
goodnight, cg
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:
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/ promote the other plays I’ve written – and since I wasn’t in the position to GO TO the theatre TO DO the work – as theatre is typically something that must be DONE, not thought about or planned or discussed – It was a hard year.
I am so glad to take a baby step back to my regular life!! Woot Woot.
And I painted my nails dark purple to . . . you know . . . look super artsy.
xxo cg
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
