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Showing posts from January, 2010

UnBlog Post Is Up

Topic: Dear Cosmos, I am cranky and I am expressive, but I'm still and good tx candidate and here is why. (Later to be edited for mass consumption). Later playahs, CG

Teens and CF, what'd'ya think?

I posted this on bloggy boyfriend Ronnie's site, and wonder what you all think about CF and raising a teenager. Here is my take on my teen years and CF: I credit my parents for putting me in charge of my health care routine very early, by age 11 or 12, so that when the really bad adolescent stuff hit in high school, CF was not another power player in our teen issues. I was already doing my meds, calling in my prescriptions, having them delivered, cleaning my nebs, etc. I remember, at the time, that a lot of my friends and friends' parents thought it was crazy how much responsibility my parents gave me, but i know now that it was a great decision because it kept the CF responsibilities separate from the teen angst and car-key arguments, for example :0) My parents never used my health as a qualifier for other decisions (i.e. "you can't go out, I heard you coughing," and they never used my life as a comment on my health ("you must be sick because you stayed out

The Office Work of Transplant

There is a lot of bill paying and budgeting and phone calling and copying and emailing involved in transplant. To get back in the swing of showing you what's up with CG, I am going to start to copy you on my office work. FUN! :) This is an email between me and my CF doc about what I should do regarding double listing. I wonder, do any of you have thoughts about double listing and transplant? < Dear Dr. U-Bird: I know you cannot disclose my status, and I don't want you to. But, now that I have hit the 90 day mark on the waiting list, I have been rediscovering the UNOS database and trying to get a handle on my wait time at the [Tx Center]. I believe that my LAS score is about 38, but it could be lower. It seems like at the [Tx Center], people are not getting transplanted until their LAS score is 40 or above, which makes me fear that I will have to survive another bought of sickness to be moved up on the list and receive lungs here in [this area]. Even so, it would be muc

The end of anonymous CG commentification

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Sorry, folks. After long deliberation I have to end anonymous comments here on the CG. Still getting my share of weirdo comments and hoping they will go away by forcing email or other identifiers :) Then again, I might just get a bunch of weirdo comments signed "Weirdo@gmail.com" - but it's worth a shot. No there is still no news. No news is no news. And I am in a horrible mood and don't you all go emailing me about it. Sometimes a bad mood just strikes. I have noticed on my other bloggies' blogs, that bad moods seem to hit us cgs in a wave. Brandi is in a bad mood this week too that she blames on prednisone. I too am on on the 'sone, so maybe that is why I'm in the zone of bad moods. Who knows. Oh me oh my, my poor mother is putting up with me. No picnic, indeedilly-doo. Love, CG P.S. New survey to the right! Take it!

No News is . . . NO NEWS

I have not been writing 'cuz I ain't got no news and I have nothing to say- either! I had a bad week because an old friend came in town and we had not-as-much-fun as I thought we would. I'm not saying I've been in a funk ever since, but . . . that's all I got to say about that. When are my new lungs coming!? Love, CG

Pressure...dun a dun a, dun a dun a PRESHAHHHH!

I've been thinking a lot about the way that our bodies handle stress when we are physically challenged. I am obviously hanging on by a sort of thin thread here since I got out of the hospital in November. By the very nature of being active on the transplant list it means that you are in "end stage" disease. This still shocks me, when I read it on my chart (which I steal to read out of the door basket thingie of every room I am ever waiting in, in any hospital or doctor facility, ever). Ever time I read "end stage lung disease," or "respiratory failure" or any of the scarier phrases that have been attributed to my health in the last few months, I think, "Seriously?!" But anyway- so that is where I am in my body right now. A body in that state is going to react to stress differently- and obviously I'm talking about my body. Ever since I got out of the ICU in the fall, I have been thinking about the way that we humans handle stress, and how

CG, where you at? What you do? Where you go?

Sometimes I'm too sleepy tired to write anything so I sit around reading other things. Tonight, I read THIS Euro article about hypercapnia (respiratory failure t2). I like to read medical journal articles about my medical problems so that a) I'll be more apt to understand why doctors choose certain courses of treatment b) so I can worry about myself in new, more vocabularicly correct detail. (That's right, vocabularicly .) I highly recommend reading as many articles from Chest Journal. Although, word to the wise-ass: I can't seem to figure out why most articles are free and then woops another one will be like, "Give me 12 dollars." I always say, "No," and google the article some other way. Whatevs. Maybe you have 12 dollars. I spend mine on cat treats. Goodnight! bp

The Best of UnBlog: Second Edition

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This week's Best of UnBlog features some great narrative comments from other CGs !! If you're a CG and you haven't joined the ranting raving good time, send me an email and I'll invite you! Love, CG An ICU story: it's okay to need help Before I was in the ICU, and I mean until the very moment I woke up in the ICU, I persistently found it very upsetting when people would have to help me do things. Now, don't be confused, I was grateful to be helped. I needed help doing some things for the whole year prior to my ICU stay. I needed help doing these things: shoveling snow, moving groceries, doing laundry, moving items up stairs in building without an elevator, etc. When I woke up ICU, I need help doing these sorts of things: walking to the toilet; washing my hair; putting my shoes on; getting situated in my bed for sleep. Actually- in the ICU, I learned from one of the doctors that in his opinion, getting situated in bed for sleep is one of the most athletic thi

"You Should REALLY . . . "

My Mom and I were ranting and raving like a couple of comedic crazies the other day on the way home from PT. It dawned on us that we have had it UP TO HERE with having each medical person thinking that their prescribed medical miracle is the most important one to stick to among all of the others. In my brain it has become one big mish -mosh of: "Wake up earlier - sleep in later - stay on the bipap - not too much time on the bipap - on the bipap as much as you can tolerate - are you exercising alone - safest to exercise at pt - you should use you treadmill at home everyday - no one can expect YOU to exercise everyday - are you cleaning your equiptment - you should clean it after every use - i mean daily - i mean weekly - well really just rinse it - boil it for an hour and let it air dry - but no matter what don't let it air dry - and take those nebulizers - eat a lot of food - airway clearance is important - well at your stage, not too important - four times a day is

Quickie: UnBlog Say What?

In my explanation of UnBlog , I told you the "Why" of UnBlog , and those invited were instructed on the "Where" of UnBlog , but I missed one important W. W hat is UnBlog ? It is a blog just like this one, but it is not public, like this one. Anyone in the world (as seen below) can read this blog. They can also email it as a link to anyone else in the world, quote me from it, and I use my real name on it too. The UnBlog is a private blog. In order to access it, members log in by clicking "UnBlog" to the right. As the author of the blog, I invite readers to it and they log in , or request the UnBlog come through on their Google Reader or Feed. They can also make unmoderated comments. As I explained below, I created CGUnBlog so that I can write consistent, unfettered, daily CG posts without turning on my sizable MEPeditor (despite the fact that I misspelled 'dying' below). I have only invited two categories of people to read it: actual CF patie

In the Year 2000...In the Year 2,000 NINE

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2009 CysticGal Facts and Figures: 11, 548 Unique Readers 5, 387 Returning Readers (I guess I scared away the other half?!) 179 Readers, top number of unique readers in a 24 hour period, just yesterday! YAY UnBlog! 71 Public Bloggy Followers 58 Readers per day on average 31 First-Time Readers per day on average 14 Subscribers 12 Countries with current Readers: USA and Puerto Rico, UK, Canada, Italy, Bulgaria, Philippines, Turkey (Thanks J!), India, Pakistan, Slovakia, Belgium and France (Hi, K!). I am excited to also share that I have readers who are CF patients, parents, nurses, doctors, medical students, and friends of CF patients. It has been wonderful to write to different perspectives on the blog and I hope to continue it in 2010!!! Thanks so much for reading and participating too! New Year, New Lungs, CG

Update!

Ok, I just discovered two other UnBlogs on page 2 of my google search. I also discovered this sentence: "Un Blog provides French language free blog hosting."- I clicked, "What does this site have against the French language?" I thought. But oh no! The site was written in French! Syntax. It'll get you every time! Un Blog provides free French language blog hosting.

The Best of UnBlog: First Edition

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I offer a new idea in blogosphere (as far as my googling eyes can spy) UnBlog . UnBlog : (noun): The opposite of a blog; A website to store privately that which one does not desire to share publicly on a blog; (verb):To post on an UnBlog . Cystic Gal (CG) UnBlog : CGUnBlog I will be using UnBlog to write more veraciously everyday, so that I can worry about editing later without clogging up the CG blog. Read other reasons below in . . . THE BEST OF UnBLOG : First Edition , where I show a melding of the discussions (me, discussing with me . . .) that came up on UnBlog recently. Why UnBlog ? One reason is that I have a lot of younger readers of the CG, both my irl students (post high school) and young CFers . I started to feel like there are some things I don't want to say on the CG if I know my youngies are gonna read them. For example, the holidays STRESSED MY SHIT OUT and I could not write about it a single bit because it would've offended the shiiiit out of

My Tx Song List!

It's complete! My song list for Dr. CJet ^ to use during my tx surgery! I'm pretty decided on it, but whaddya think?!! Boston Augustana What A Good Boy Barenaked Ladies When I Fall Barenaked Ladies Wrap Your Arms around Me Barenaked Ladies You Will Be Waiting Barenaked Ladies And So It Goes Billy Joel I Gotta Feeling Black Eyed Peas twenty one Corey Smith Tennessee Line Daughtry #41 Dave Matthews Band Stay (Wasting Time) Dave Matthews Band I'll Back You Up Dave Matthews Band Slow Motion David Gray Soul Meets Body Death Cab For Cutie Not Ready to Make Nice Dixie Chicks Swimming to the Other Side Emma's Revolution Rhiannon Fleetwood Mac No Woman, No Cry (L.P. Version) Fugees Falling Slowly Glen Hansard & Marketa Irglova If You Want Me Glen Hansard & Marketa Irglova

Thank

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Healing Statements for Surgery

I am using a book, Prepare for Surgery, Heal Faster , by P. Huddleston, to get ready for transplant. The book was recommended by my surgeons and it teaches about mind/body techniques that are particular to major surgery. One of the things taught in the book is to prepare Healing Statements for the surgeon, anesthesiologist and nurses to use prior to, during and after the surgery. The use of Healing Statements has been studied and found to ease the surgical procedure and healing times in patients. You might have read in my prior post that Dr. CJet^ plans to use my Healing Statements, and remarked that "people do indeed" use them - because of course I was skeptical. Here we go! ******************************************* Dear Doctors and Nurses, In preparation for my lung transplant surgery, I have prepare the following Healing Statements. Please read them to me at the times indicated. Please read the statements more than once (up to five times!), and repeat them in particular