Re: Cystic Gal

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------Original Message------
From: Cystic Gal <CysticGal@gmail.com>
To: <cysticgal@gmail.com>
Date: Tuesday, August 3, 2010 5:07:38 AM GMT+0000
Subject: Cystic Gal

Cystic Gal

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CysticGal Questions - Answered (mostly)

Posted: 02 Aug 2010 01:41 PM PDT
http://feedproxy.google.com/~r/CysticGal/~3/WMaMVSnCt94/cysticgal-questions-answered-mostly.html?utm_source=feedburner&utm_medium=email

Q:  Where should I send CysticGal get well gifts?
A:  Send them to her home, and CysticDad will bring them to the hospital.

Q:  What should I send?
A:  Anything except flowers.

Q:  How long will CysticGal be in the hospital?
A:  Maybe about two weeks.  Let's look for her to get home on her birthday.

Q:  Why would CysticGal need a bronchoscopy after a lung transplant?
A:  Bronchoscopy is a

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CysticGal Q&A Sessions

Posted: 02 Aug 2010 09:26 AM PDT
http://feedproxy.google.com/~r/CysticGal/~3/E0Vep8DwAyY/cysticgal-q-sessions.html?utm_source=feedburner&utm_medium=email

Hey !

It's hard for me to think of things to write these days, so, I had this
idea for a Q&A session from the CG fans.  You email me at
peterstmusc@gmail.com with a question you'd like answered, and I will find
out and answer it on the blog!

TP

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CysticGal progress by CL (TP)

Posted: 02 Aug 2010 07:32 AM PDT
http://feedproxy.google.com/~r/CysticGal/~3/cx8Gfsgot6Y/cysticgal-progress-by-cl-tp.html?utm_source=feedburner&utm_medium=email

Yesterday they moved CysticGal to the step-down unit where she has her own
room.  She told me that she was having some pain issues last night.  I
heard from CysticDad that they took her off of all of her IVs yesterday.

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CysticGal Questions - Answered (mostly)

Q:  Where should I send CysticGal get well gifts?
A:  Send them to her home, and CysticDad will bring them to the hospital.

Q:  What should I send?
A:  Anything except flowers.

Q:  How long will CysticGal be in the hospital?
A:  Maybe about two weeks.  Let's look for her to get home on her birthday.

Q:  Why would CysticGal need a bronchoscopy after a lung transplant?
A:  Bronchoscopy is a useful tool post transplant.  It provides a way to look visually at the anastomosis (where the lungs are put together), the general look of the airways, a way to biopsy to check for rejection, and a lavage to check for bacterial infection, viruses, or fungus.

Q:  Do you know anything about the donor?
A:  It is actually quite a personal question to ask a transplant patient about their donor.  CG says that she knows nothing of the donor except that the size match was perfect. 

Q:  How different does breathing feel?
A:  CG says her new breathing is "huge and weird like a big empty cave."  She is still wheezy and having trouble coughing.

Q:  Do you still need to continue the daily CF therapies?
A:  For a few months tops, you will still have to inhale Tobramycin and perhaps another inhaled antibiotic.  You will no longer need Pulmozyme, or to do any kind of Chest PT.

Q:  Since you still have CF, how does that effect the new lungs?
A:  The new lungs will not have CF, and will not develop it over time.

Q:  What are the new meds like?
A:  CG says that the new meds are overwhelming but that they are still being managed for her.  Tomorrow she will start recording them on her own.  She thinks there are "so so many." 

Q:  How's the scar? 
A:  CG has not yet looked at the scar in the mirror.  She says it is very close under her breasts so she hasn't seen it yet really.  She believes that she has received an accident boob lift.  For serious.

CysticGal Q&A Sessions

Hey !

It's hard for me to think of things to write these days, so, I had this idea for a Q&A session from the CG fans.  You email me at peterstmusc@gmail.com with a question you'd like answered, and I will find out and answer it on the blog!

TP

CysticGal progress by CL (TP)

Yesterday they moved CysticGal to the step-down unit where she has her own room.  She told me that she was having some pain issues last night.  I heard from CysticDad that they took her off of all of her IVs yesterday.

Chillin in one of my adorable annie and isabelle gowns! Thanks so much. I'm worn out today from getting rid of 4 tubes that will go unexplained, and my post surgery adrenaline: gone. Very sore and tired, but breathin' deep and can't wait for a fresh start tomorrow!

CysticGal Called Last Night

Last night CysticGal called me for a few moments at 10:31.  She sounded super.  She says it hurts when she coughs, and CysticDad is running around trying to find her a super great hard pillow like I had.  You hug it to you when you cough, and well, it makes you feel a bit better.  Lots of coughing happens after transplant because lungs get irritated after you say, take them out of a human and put them in another human.  They make a lot of mucus as a defense mechanism, but it is not CF mucus, rather, normal people mucus, it is just that there is a lot of it. 

And now for a surprise!  CysticGal text me this self-portrait, and told me to post it on the blog!  CysticGal, July 29, 11:16 PM.  That's about 42 hours after she got out of surgery!

Progress for CysticGal

Another good day for CysticGal.  She looks great according to CysticMommy.  She went for a walk today.  They took her off of the heart monitor and removed the NG tube.  She is eating Jello and drinking Ginger Ale.

I forgot my other notes at work.  :(  If you have any specific questions, you can email me at peterstmusc@gmail.com.

Yay CysticGal is Rocking OUT

CysticGal is off the ventilator, sitting up, and talking up a storm!  She is my sister after all :)  xxoo

CysticGal trying to breath those lungs

CysticDad just called and they kicked him and mom out of the room in order to bronch CysticGal and also try to pull her off of the ventilator.  He said that they will give her a PCA, which is really a nice luxury I never had.  Go CG!  In the words of Dr. Duane Davis, "Breathe slow and deep like a normal person!"  :)

More CysticGal Progress

I just heard from CysticDad.  CysticGal is in ICU, and in and out of consciousness.  She has asked for her glasses.  Her eyes aren't that bad, but I bet that dope makes them feel blurry :).  She indicates that her chest hurts.  CysticDad feels like things are going really well.

Small Update on CysticGal

I haven't really heard anything from my parents, but I did hear that CysticGal was in ICU as of this morning and doing very well.  Hoping to hear more from the P's soon.

No Lungs, No Peace, Get Outta Here!

As of 5:26 AM CysticGal is out of surgery, off the bypass, and is scheduled to arrive in the ICU shortly. 

Whoo hoo!  Thanks to everyone for their well-wishes and especially to the donor family, for a faith that is hard to imagine.

Here are some of her Facebook and Twitter comments (names withheld):

Thinking of you today. Go get 'em.

Sending good thoughts your way! We love you!

Be the ones!! I won't hold it against you if we can't meet in Columbus because you got NEW LUNGS!!! Be the ones!!

Hoping, hoping, hoping

sending good thoughts your way

Yay!!!!! Peaceful vibes peaceful vibes peaceful vibes

Good, good, good thoughts from England!

So you got the "call"? Im out of the loop since my daughters admission.

Are you at the same place I got mine? It isn't Monday so this is not going to be a dry run! Your turn is today!

love and light your way all the time.

Love!

WHOA!! Such exciting news! Sending every ounce of good energy, love, hope, prayer your way!!

So much love to you !!!xoxo

Thank God! I am so excited! Let me know if you need any. Thing.

Yaaaay! Good luck girlie, keeping you in my thoughts

WOOOHOO! smooth surgery vibes heading your way! this news made my day, week, month....and more! i can't stop smiling....can't wait to hear that you are recovering and breathing easily again!

I'm sending such good vibes right now. Can you feel them?

Liking this so hard! Good luck!

Wow! Crossing my fingers and hoping like crazy for you....

Thoughts, prayers and hugs to you!

Yay Yay Yay!!! Remember when I am the Maid of Honor is this surgery! :) love love love

Countless good wishes, prayers, love, and really good juju your way, Sweetie. Will be attached to the computer from now on. Love, love, love you.

My thoughts and prayers are with you!

Good luck! I hope everything goes well!

Good luck ! Sending out the best vibes I have!

Sending positive thoughts, love and prayers your way!

 Finally!!! We will all be thinking good thoughts for you!! Love from us all.

Praying, praying, praying...and I just put on my CG-T-shirt for extra good measure...good vibes...everyone's pulling for you! Love!

Sending the most positive thoughts I have to you!!!

prayers and hugs to you!

prayers and love and gratitude and receptive peace.... and deep deep breaths of sweet cool air!

Good vibes are being sent your way!

Just read the message. I am praying everything goes well for you. It's been a long wait.

Sending good thoughts your way !!! xoxo

wooohoo!

love to you, friend. thinking, hoping, praying, sending good energy -- whatever i can do to get the message across!

I'm so excited for you!!! Please let these be the perfect windbags for you!

Thinking of you CG!!!

please send all the love and light you can spare over to [CysticGal] this afternoon as she waits for a possible lung transplant. go, CG, go!

sending good lung vibes to [CysticGal]! crossing fingers for "a go"! ♥

Fingers crossed that this is the right pair for you! I hope you packed your music and sneakers for walking around the ward after! Lots of love your way.

Wahoo  !!

I am just reading about all of this [CysticGal]...I am praying for you!!

Are you kidding? Have you seen my facebook status as of last night? This is awesome.

I'm looking forward in hearing from you soon. Good luck!

Good luck!!!!

You are in wonderful hands Beth, we are rooting for a smooth path for you. Wahoo !

is hoping her "no rejection, no antibodies" status lends positivity to [CysticGal] and her transplant!!! NLNP!

I am sending all my love and healing thoughts. Wake up rested and breathing deep my friend.

I hope this is the real deal. Then we can celebrate your birthday and new lungs later in August/September. These would be the best early birthday present you could get. Good luck and I hope everything goes smoothly for you.

hope it's going well ! love and positive vibes to you right now!

OMG!!! Yay!!!! Thinking of you right now and praying my little heart out! I'm so happy!

I hope everything goes great cousin!! Good luck!!

All a part of the master plan. You get new lungs, and I get a PIR director in the spring! Go, girl, go!

Hope everything is going well tonight. We are thinking of you and sending good thoughts your way.

Those docs should really let you text message from surgery, my Chicken Patty. Until they do, FaceBook must suffice. Guess that birthday party of yours will be from recovery after all!!! Love you!

so unbelievably happy for you, CG!

YAY!! Thoughts and prayers are with you!!

Sally!

All the love and light I can muster up is headed your way. So very happy for you.

Awesome news! Very happy for you. Thoughts & prayers are with you tonight.

Yay!! Go [CysticGal]!!!!

ALL OUR LOVE AND PRAYERS TO YOU!!!!!!!!!!!!!

LOVE YOU BETH!!!!!!!!!!!!!!!!!!! Thinking of you and knowing that your greater than mine will ever be!

Lots of love. Lots of light. Lots of prayers. ♥

You have my absolute best wishes , hope to hear great news from you soon!

BEST WISHES , thinking of you!!!

Congrats Lady!! Such great news!! :)

Thinking of you!

@CysticGal u r in my thoughts and prayers for a speedy recovery!!! ♥♥♥

3 cheers for @CysticGal. Getting her lungs as we speak.

Fingers crossed for @cysticgal who is getting a new pair of lungs (!!!) right now. Hope the surgery goes well!

Please send prayers out for mah friend @CysticGal who received a double lung transplant tonight. Crying for her (cont) http://tl.gd/2pk0oi

Please pray for my friend @cysticgal as she has a lung transplant for #CysticFibrosis

Heard from a mutual friend you're getting some new breathers. Just wanted to send you some good luck.My thoughts are with you! :) .

The @cysticgal news is the best news I've heard all week. And it's only #Tuesday. #cfusa #transplant

Lungs are tonight's reason to smile! @cysticgal

@CysticGal is just under the knife to receive her new air bags! I'm so excited for her! #transplant #cfusa

@cffatboy @unknowncystic perhaps simply wearing THE MOST BADASS article of clothing we own, in honor of general @CysticGal badassery.

What color do we wear when @CysticGal gets out? I'm not wearing pink, but I have salmon.

Going to bed with prayers for @cysticgal. Her blog says double lung transplant has started http://bit.ly/19p8nM

@CysticGal We don't know each other but I caught a tweet abt ur surgery tonight ~ I'll say a prayer for ur speedy recovery..sending hugs!

Sending love & hope RT @chronicuriosity: @mccordalex your faithful, feisty friend @CysticGal is getting a double lung transplant tonight!

All my <3 to @CysticGal - new lungs at 21:00 EST! Tweet (or RT) the love, people! #cysticfibrosis #cfusa

Salty Dog, by CysticLady

First, an update.  CysticDad just called and said they came out and said everything is going textbook so far, they have put in one whole side of new lungs and they are getting ready to take out the next side.  Yay!

Second, a comment, I only have writing permissions on the blog, so I won't be able to approve any comments that you make.  Sorry!

I was reading my posts keeping the readers abreast of the status of my sister, when I realized that they lack that wonderful little thing called EMOTION.  This I attribute to me being a "salty dog."  For those that are not aware, that is a word/phrase used in the Navy and Marine Corps to describe an old and experienced sailor.  I think it is also specifically fitting to anyone with Cystic Fibrosis, since we are literally so salty.  And, by the time you are almost seven years post transplant you just roll with it. 

So, in the case that CysticGal goes back and reads my posts on her blog, these are my words of advice on how to survive your transplant:
1)  Slow and steady wins the race.  Thanks to Michael Reidy, M.D., for explaining to me early that this is a day to day process that will last forever, not a quick race to the end.  Just keep chugging along.
2)  Use people's strengths, don't make them be good at their weaknesses too.  For example, one of your a-hole doctors may have a personality problem, but may be the best physician.  Separate the two, and get someone else to give you warm and fuzzies.
3)  Don't get discouraged by bad times.  It is easy to feel disappointment or even failure when you have rejection, or a cold, or your PFTs have fallen.  It's just one of those things that happens.  See #1.
4)  There is no normal, there is only experience.
5)  Work harder than you ever had.  You want to pray?  Pray while you're walking.  You want to swear at people?  Swear while you're walking.  You want to tell people to SUCK IT?  Try the phrase, "I walked four miles around the nurses station yesterday, SUCK IT."  It rules.
6)  Brag like hell about how awesome you are.  (I think CysticGal has this one down already)

Will keep updating.  TP

It's a GO, for realz

Best update so far...  CysticGal surgery is started.  Her incision is made.  CysticParents are on the scene.  Storm in Charlotte held up the plane.  CysticParents sound tired.  Friend T^Money is still on the scene too.  Thanks for all of the warm fuzzies and prayers and all.

This is what I know so far

Beth is under anesthesia and my parents are... somewhere.  Real surgery to begin shortly.  My guess is that they were on US Air flight 1176 that was supposed to land at 8:14 and actually landed at 9:27.

Update - Looking Good

CysticGal Reports that "Things are looking good.  Dr. C-Boston-y is procuring the lungs.  They think surgery around 9."  That's 21:00 hours folks. 

Parents In-Route

CysticMommy and CysticDad are in the Charlotte Airport waiting to catch their 6:00 flight to Boston!  No update from CysticGal yet.

Post from CysticLady

CysticGal is at Brigham & Women's right now, having gotten a call that she is the candidate first in line for lungs.  The Cystic Parents have plans to fly up there and land at 8.  Exciting!

Got a CALL

As the primary recip. ...
Will update. Gotta go to hospital!!
Big prayers and love and light my way, pls.
xxoo, cg

Next Time I Hear "You Shouldn't Meet Others with CF" . . .

from someone in their thirties or forties who's been involved with CF for 15 years tops in a sort of academic 9-5 way, when we've all been fighting it every hour of every day and night for 30 or 40 years in a sort of physical, kinesthetic, life and breath way, I want to tell that person to read this blog entry :

http://fromatopink.wordpress.com/2010/07/21/a-look-into-the-thoughts-of-a-cfer/#comment-518

by a lovely Cystic Gal who really needs some support and just isn't getting what she needs from her non CFers and the g-damn internet.

And p.s., I'm waayyyy more likely to have gotten all of my bugs from the doctors that come in my room, insist on shaking my hand, sit down on my bed after they've sat on 100 other patient beds, dangle their germy ties in my face, or sloppily forget to wash their hands-wrists-stethoscopes, than I am to catch comething across a room from another CFer with a mask on.

And don't CFers still get together at the CFRI conference? And isn't there a big difference between going to camp in the 80s and doing our nebulizers in the same room all at once, and then sleeping side by side, than meeting for lunch once a freaking year to feel like you know someone who is at all like you- aren't those things different? AREN'T THEY?!

Okay, enough about that. I guess I'm ranty this July!