Tuesday, October 12, 2010

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 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...


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


  1. I think you will end up doing a blog of only Lifetime movie reviews.
    Glad you are doing well, and do whatever you want, lady! xo

  2. I want you to blog, but I am a cf'er... but I can see your point about everyone and their mom reading it and being upset/worried/whatever etc.

    Do as you feel comfortable for now :) I am friends with you on fb so I wont have withdrawals.

  3. I love reading your blog! I love to see your progress and the progress of others just out of transplant. At 9+ years out, I like to be reminded of my journey...it motivates me!

    So excited for no rejection! That pesky pseudo...it loves to stick around. You rock.

  4. I love to read your blog, and I would miss it- but I know if everyone I know or have ever known was readying MY blog, I'd totally stop writing the way I do, so I feel you.

    Thinking of you daily!
    <3 S

  5. Perhaps ask Family and Friends to follow you on Facebook and announce on your header that you request that only CF'ers continue to follow CysticGal. You need to seperate the groups but you have to remember you have lot's of fam and friends who want to follow you and you also have 100,000 page loads, mainly of CF'ers who log on only for the CF info. Ask your audience to police themselves. Then your CysticGal posts will be obvious that they are targeted to that audience and your Facebook posts will be more general.

  6. Hullo.

    You blog for you so maybe you could have a heart to heart with yourself and decide what you want it to be and then you could put it right in the heading. So if, fpr example, you want it to be only for people who have cf, certainly most people will respect that, and a tiny number of freaks will not. Or,alternatively, if you want a break, you could schedule a blog-vacation - a blogation?


  7. I would really miss your blog if you stopped writing... I like your daily randomlings, even if they aren't CF related!

  8. There's an old saying..."always leave them wanting more."

    Every story has an ending, CG. Great things is that once you finish a story, then you get to start a new one. One that may or may not have anything to do with blogging, or CF, or anything remotely close to the same stratosphere.

    Whatever you decide, I'm certainly glad you shared this part of your story with us.

    Peaceful things.


Thanks for commenting! Your comment will be posted ! -CG