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Showing posts from 2010

“CysticGal” a Top CF Blog, with other Bloggies!

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Yay! We are a top blog by Registerered Nurses.Org :)

Welcome to Joshland: Helping Out My Friends at CysticLife

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Welcome to Joshland: Helping Out My Friends at CysticLife :   "I am all for any organization that help the CF Community and promotes CF Awareness, so when CysticLife asked . . ." One of my bloggy bffs made a video regarding Cystic Life and their membership drive, and what do you know- I totally agree with him. Watch the video today. And p.s.- Do you think MeeGanko is a good name of a new puppet to be friends with Moganko? bp
Home from my bronch. Doing great. Time for food and sleep. My throat hurts so talkin=ow. Love, beth

Today Blew

Disclaimer to friends and family: Tomorrow I have a bronchoscopy , a procedure required many many many times post-transplant, that is not a big deal most of the time. Tomorrow is one of those times. In fact, I'm sorta looking forward to it because I haven't been sleeping well lately, and surely I will sleep well tomorrow, day and night! :) Today's annoyance at the hospital was not medical, it was ... procedural / paperworkurital / red-tape-tastical. Read the whole post- see how there's nothing in there about anything being wrong with me?    Everybody's blowin' up my phone before they read the email. :) Love you guys! Dear Hospital Place; Today was supposed to take 1-2 hours . . . [approx 300 words have been edited out for my own protection, but I will email them to you for your amusement, followers.] . . .a fracking nightmare. Sincerely, :) Beth Peters
Dear Dr. U-R-My-Favorite-Human, I miss the Children's Hospital. What is your policy on 30 year olds that look 14? Beth
Do i work here? This turning into a 9 to 5 situation.... Grr!
Pre op running 2 1/2 fhours being. That's fridiculous! I'm so ftired. F this.

Tweetin’ and Transplantin’

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This image has nothing to do with this post, and yet it came up first when I googled “Tweetin’ and Transplantin’” which is my Super Secret Special CG Image System There is a great article HERE: http://heidiallen.id.au/tcase-of-the-tweeting-kidney-patient/ about a doctor being referred by the hospital admins to revisit her/his patient because she was tweeting regarding her care, and it was clear that she had not understood a particular conversation. (That’s a lot to glean from a tweet, but… that’s another story). I encourage you to read the article, or as always- just read my response! :) <<Beth Peters November 11, 2010 at 4:35 pm # As an avid blogger and social media user, with Cystic Fibrosis, who just underwent a double lung transplant- here is my opinion. The online transplant community is HUGE. People that participate in it are pretty open and well-aware that anything they put online will be read by a) everyone they know as they are usually dying b) all their social me

CysticLife is the place to be!

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Dear Friends! Thanks for reading Cystic Gal, and for following me on my journey to transplant and now recovering (just passed three months- woot woot).  I want to invite CF patients, family and friends to join a site that I have found invaluable this past year – CysticLife.org .  It is a social networking and messaging site for uncensored storytelling, problem solving and friend making! This year, CysticLife would like to increase its membership (during its 2nd year!) They/We want to have 2011 members by Jan 11, 2011. (get it!?).  I would love it if all of my loyal CF readers would join.  Particularly, I would love it if the site (CL), had more healthcare provider members – so if you are a healthcare provider, I MAJORLY encourage you to join! Find the site here, poke around, and JOIN! Cystic Life, Org. See you there! CG Beth Peters

Tweet Me? Tweet You!

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Click on the picture above to follow Cystic Gal (aka Beth Peters ) on twitter , @CGBethPeters! Blogspot Tags: twitter , beth peters

Joshland, I am welcome there.

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http://www.welcometojoshland.com Blogspot Tags: phrases i hate , joshland , exercise Last night, Josh of Joshland and Moganko fame wrote a great post that you can find HERE . I encourage you to read it. The basic gist is that Josh doesn’t care for the term “No Excuses,” though he sees why people use it, and he’s not trying to put them down or anything. Being a phrase-hater myself, (see the post about the term “clean-out”), I really like that Josh took the time to bring this up because clearly a lot of people had it on the mind, both pro and con, as well. This is what I said: <<I agree. I made a similar post on CG last year, that I don't, personally, care for any phrase that demeans the different ways we all deal with our DIFFERENT versions of CF, lung disease, transplant... I also do not like it that there is push toward extreme exercise, when we have different abilities at different stages of our disease. Am I failure because I NEVER ran a mile, and have NEVER walked

This suff-e-rage movement, I will not join.

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  (Notes: My tech setup is much nicer than this; I am totally afraid of guns (and also clay-mation); I don't really look anything like Tina Turner.)     I am thirty, I have CF, I am post-tx after 5 surgeries, I almost died 3 times last year (literally), and I have never considered myself a “sufferer” or said, “I suffer from Cystic Fibrosis.” I don’t really know any adults who would define themselves as “suffering” from CF, even when the s. is going down. Lately, there has been a CFBloggy focus on phrases we hate in this field, which have included, “Clean out,” “I’m sorry,” (i.e. no one cares if you’re sorry if you do something that hurts my kid and I find out its because of your incompetence or fear of your superiors,) as well as several moms of tiny CFers and skinny CF ladies hear all the frackin’ time. Yesterday my BlogHomie aka “ CFFatBoy ” wrote a great article that you can find here: http:// cffatboy .com . Here was my response: <<Today I read an article that sa

What do post-transplant CFers talk about?

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A journey in cut and paste   Beth, Brandon                                                  Brandon: bp Brandon: is that a recent pic in your fb profile? Mary: yep! Brandon: you look so cool Mary: it is from me and my mom's visit to the cape Brandon: one of my most exciting things post trans Mary: i was trying to hide my slightly pudgy face that will go away soon! traveling- so much easier! Brandon: haha yeah, for sure. how are you feeling? Mary: i amf eeling okay. i am having a lot of sternum and scar pain lately Brandon: ug that sucks Mary: it feels like its getting worse and not better which sucks Brandon: my thing in the middle always gets weird hurty pains Mary: yeah they suck Brandon: i hate it Mary: did you know in heart transplants they take them out a year after? why not us?! Brandon: i did not, i don't know...good q Mary: probably "blah blah blah infection" or something. this is what i am worried about. 3 weeks ago i developed a bad wheez and they found

completely random video.

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Breathe Easy, Gess.

We have lost a fellow bloggy today, Gess, who was in the process of being listed for lung and liver transplants in Seattle. His wife, Lisa, keeps a blog about their marriage and management of Gess’ advanced CF. As I have recently passed my three-month-aversary for transplant, it is important to remember the thousands of CF patients who have passed away without this second opportunity at life, and the loved ones they leave behind. Breathe freely, Gess, and our prayers are with you and Lisa. Love, CG

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

Sternum, Sternum, Why You So Pokey

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My sternum wire is driving me crazy and I swear that either I’m turning into a rhinocceros, or something is up with my sternum wires. My weight is going up and YET, YET, my sternum wires seem to be popping out of my chest MORE and ladies, I could add some details about this but I won’t but I am NOT PLEASED. So I go a-googliin’ and what do I find out? All these homies with their open heart surgeries get their sternum wires REMOVED! Removed I tell you!! I have never heard of a LUNG tx patient getting their sternum wires removed. Have you? Do tell!!! cysticgal@gmail.com Between my wires and my stretch marks from the 40lbs of water I gained and lost in three weeks, and the scars on my tummy, chest, and arms including two weird bumps from the anti-coag that I’m allergic to, that they forced me to take before I remembered how to put my foot down with the R word (refuse)---- I’m a friggin mess and good thing this isn’t the year for Project Cruise Hotness, as I would be a sore disappointmen

Give Shrimp a Chance

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Short post as I’m still working off the Versed. Bronch went very well. Minor anxiety that passed. Dr. G-tinymighty is awesome and I hope she does all my bronchs. I did not behave inappropriately during sedation. They didn’t find anything concerning to talk about, initially, other than inflammation- which I knew from the weekend. And I have had no pain afterward. Just sleep. And I love my Mommy for, as always, taking the good care of me. Also, this whole low fat diet started with my desire to eat shrimp, which frankly, I came out of the womb with. Every Christmas Eve, my dad makes a big bowl of shrimp and I eat half o them while the rest of my fam eats a respectively 3-5 shrimpies. Somehow, my doc, my family, and I all assumed that shrimp were high in fat- WRONG. They are high in calories, cholesterol and sodium. I need two of those three! They are NOT high in fat unless cooked in a fatty way. WTF society? LET ME EAT SHRIMP! Tomorrow I get to meet Jessica Newport!!! I am so excited f

First Outpatient Bronchoscopy Tomorrow

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Ugho. Knowing me as you do, blog family, you know I had to spend today worrying about this. FYI: What is a bronchoscopy? A bronchosopy or “bronch” is when they use conscious sedation (you are awake but all high, but still requires to participate in the procedure actively), they numb your mouth and throat really well (hopefully), and they use a flexible scope and camera to look all around the inside of your lungs, and sometimes they take samples, which they can test for early signs of infection or rejection before they present themselves as illness (when they’re just a’brewin’). How Often Do Tx Patients Get a Bronch? At my center, at few days after surgery, at 2 weeks, at a month, three months, 6 months, and a year or whenever your surgeon wants. For me, the schedule is messed up because they bronched me during 2 of my 3 thoracotomies, while I was “under.” So, my last bronch was on my 30th birthday, Aug. 11th.  YAY! jk. So, I got to skip my 1 month bronch which would have been Aug. 27

Too cute and cartoonie not to post. Only a tid-bit of actual info.

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and holy s, i must get better at crafting or choosing or whatever, opening images. i always, ALWAYS look like a psychopath in the opening image (and, closing….wait….do I look like a psychopath the whole time?

Letsdothis: escape

This year something weird happened for a childhood friend of mine, and me. We both had these horrible health crises - mine, unepextedly preparing for transplant at least a year earlier than I thought and at a much more dire state, and her - cancer. This friend and I were close in ... wait for it... .4th and 5th grade. But the strange thing is that we went through an amazing amoung of shit together in those two grades. Then the blogs begin and we discover each other experiencing these two things, and have been able to be there for each other in an odd, outside, honest way. I am very grateful. Here is her post today, which is much how I feel or have felt this year: Letsdothis: escape : "wish i could skip ahead in time to a different time.. as if my life were made of film but instead i find myself at the root of my life my ..."

So tired and drug interactions and Q/A

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So yesterday’s post starring B-Kitty posed a few questions to your friend CG. 1) What is my center’s guidelines for pets? No birds. No new pets until a year post-tx (which was very sad for me, as I hoped to get another cat for B-Kitty after poor S-Purry passed away), wash hands after petting, stay updated on vaccinations, and that’s about it.  For cats- Tx patients CANNOT do cat litter because of toxoplasmosis and also cat-scratch fever (a real disease).  Luckily, I have the automatic litter box and my Mom changes it every couple of weeks. HOWEVER, other centers are dead-set against pets in the bed, and its probably not THAT great of an idea. 2) Did I wear a mask to go to the mall? I was all prepared to, but when T-Money and I arrived at the mall it was like a ghost town, so it seemed funny to and pointless to wear the mask. On the other hand,  (and a true sign of the economy), the next day my Mother and I went to Moody Street for ice cream and stopped in both the thrift store and

Cat says Mommy

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This is tonight’s news, since you are all enjoying video-CG so much ! This is also an open inquiry for tips on post-transplant muscle fatigue/atrophy and soreness as you re-build. I lost a lot of muscles in my legs and butt and today, horrifyingly, I remembered that when I was in the ICU in the fall of 2009, they told me that for every DAY of bed-rest, one needs a WEEK of rehab. By that standard, I might be singing RUDOLPH THE RED-NOSED REINDEER by the time my ass is back in shape. ughie!  

Random boring video

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Video Updates are Easier!

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So sorry that I haven’t been writing more. I hope to get back on the horse, soon. Here is an informative video about my first post-tx trip to clinic, which was today!

Home Again, Home Again, Jiggetty Jig

This'll be yet another quick post to hopefully launch me into posting more often. I finally arrived home on Thursday late afternoon, and I have been enjoying the joys, rest and calm of home along with the very busy busy busy ness of taking my meds and exercising and resting. Like a lot of other post-transplanters, I actually am finding the pills easy to manage compared to home IVs or nebulizers or the bipap nap - but the meds themselves (and still some pain meds) make me tired in the head, and the exercise and general rebuild-CG-plan (uh... plus the 5 surgeries) make me pretty sore in the morning.... til like noon. Then I feel pretty good the rest of the day. My mom and I are having a pretty good time learning how to cook with less fat, and after so many weeks of barely eating at all, I'm finding that low fat or no-fat foods taste yummy enough to me. Weird. I've started scar lotions for ALL of my scars from the IV lines, drains, and surgeries. Aye Aye Aye. I swear it look
Going home in a few hours! So excited!

Early thoughts on infection and rejection

. . . and my new less-crazy lifestyle for awhile. Well, my lifestyle has been pretty non-crazy for a year, but ... whatever. This post is part PSA, part blather blather blather. I am preparing to leave the hospital (!!) and realize that I have never taken the time on the site to write about the two big words in transplant medicine: infection and rejection. After one gets a new set of airbags, they have to suppress their immune system severely to encourage their own body to accept an organ from another body, regardless of he matches in blood, tissue, and immunology. So, right now, I am the MOST immuno-suppresssed as I will likely ever be (other than, say, the first week after the surgery). At the same time, the body is vulnerable to all sorts of infections from the outside world due to the surgery, from the donor and her/his immunology (disease) history, and the stressors of recovering, in my case, from a 30 year pnuemonia. In fact, my body harbors all the infections that used to live

good but tired

Hey y'all. This post is a general apology for not posting more lately. I have videos and pics from the night of my tx, and tons tons tons to tell you about, but I am so focused right now on getting my physical self back together, my mental self is sorta tired. This whole 5-6 weeks in the hospital, I have not read a page of a book, for example. I prefer Law and Order RERUNS over new episodes. I am just mentally blank from all that has happened and so not much left for the typie types. The physical update is that, I was right, I DID lose a ton of weight under the whole water-retention-trauma. So, officially I am a CFer on an extremely low fat diet who needs to eat a lot of calories. I am hoping this fat avoidance period can end soon. Today I had a chest CT and it showed decreases to the areas of edema (fluid) in my pleural (outside the lung, inside the chest) space, and a greater decrease to the water behind my heart. So that's good. I am exercising more and more, but I'm o

team america/south park montage song

I feel like so much has gone on in the last 5 weeks that I don't know where to start. My brother recommended that I make a montage. Will start tomorrow. Enjoy.

quickie

good day today. climbed flight of stairs, and i can touch my toes again! limber cg is not gone forever! very sleepy at the end of days since i'm doing more workout. will try to post in day light tomorrow. xxoo ---------- bp /cg

sleepy

another good day. woke up with pain but it went away more quickly. increased the walking. ate some foods. don't have to wear heart monitor anymore. but am sleepy. so sleepy forget nouns. nouns bad. oh wait now that's verbs. i better go to sleep before all the parts of speech have left me and you just get one big . . . xxoo, cg

Another Day and some thoughts on PRECAUTIONS

Today was a good day after, say, 11 when my Mom got here and gave me a magical butterscotch candy that made me feel better. No joke. That witch woman, gotta love her. I woke up very very sore all over, which I blame on the final push to clear all these fluids and some mild dehydration while I rocked out the exercise yesterday. Major accomplishments today: Got my neck IV pulled, so the first time since 7/27, I do NOT look like Frankenstein. I got another bulb pulled, so now I only have 2 chest tubes :) and sleeping on my right side may be possible tomorrow! AND they removed 1/2 of my staples from THE SCAR (every other stitch.) Also, my nutritionist now fully believes that under the water weight I was able to totally maintain my real weight- which is awesome! We all really worried that due to all the nutrition problems, I'd lose like 10 pounds under all that fluid! Ok - the other thing I was gonna right about is precautions after tx for the first 6 months. Oddly, I cannot find a good

news and yoga

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Becky completing her morning postures even in the absence of her mother. Notice how she is truly in a zen place. Soft eyes, soft mouth, gentle kitty. News: In case I didn't tell you, yesterday I had two of my chest tubes pulled! Yay! That leaves only three little bulb things. AND my weight is now matching my admission weight of teeny tiny. My feet are still marshmallowy. I am cute. Today, they stopped the IV nutrition TPN, and I was actually hungry from my tummy for the first time in many many weeks. Unfortunately, dinner gave me heartburn so I didn't get to eat much of it. But boy applesauce is good. Yummola. Today, I walked 1/3 of a mile, and on my walks I had no pain! I have reached the point where exercise really DOES make me feel better, as apposed to bringing on the pain like it did before. AND I am not leaking anything out of anywhere :) Yoga: Anyone can do yoga. Kids can do yoga. Older people can do yoga. Cats can do yoga. Post-transplant patients with 40 lbs of fluid

post tx milestone:

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sleeping on one's side. observe: Since I usually sleep on my side, this past month of sleeping while carefully positioned flat on my back has been less than ideal for ... say... my back! But today I successfully napped on my side. I was out like a light! But, I slept too long and good that way because I was sore on that side for about an hour when I woke up. However, I think it was worth it. I was sleeping on my left side, which hasn't had surgery since the original 7/27. My right side, deeply traumatized til 8/11, is a total no sleep zone. on that note, goodnight!
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A tiny little picture, but its me outside, looking rockstar with my cutest favorite Annie and Isabelle hospital gown / (in New England they say "johnny"). I'll write a more proper post about my cute gowns some other day, but knowing you will compliment my pink polka-dotted gown, I thought I'd give you the info. Today it was hot up here! I went outside for about a half hour with me Dad and we sat in the sun for about... 2 1/2 minutes. I am worried that my hair is thinning/ falling out. Please comment. As a CFer, however, I always know how to add hypochondria to regular-chondria, so feel free to let me know that too. The hospital has turned boring these past few days. The only IVs I am doing are the nutrition (20 hours a day thank you very much), and I'm walking by myself. So we better get back onto food going down my gullet so I can go home soon! Today my buddy J-Sing came to see me, which was awesome as always. This week we are going to play cards and plot our

100% again, I'll take it

Hello y'all, it's meee again. I'm just gonna write a big old random post tonight because I want to get back in the habit of posting but I don't really have the brainpower right now to have, you know, a topic. So, my topic is that my resting 02 was just 100%, AGAIN. The nurses are annoyed with checking it because it is always so high :) Isn't that hilarious. And that is on exercise restrictions!! While we are trying to put a final end to my lymphatic troubles, I am supposed to "take it easy" this weekend and the nurses have been told that I am on "walking restrictions." I think this is because one of my fave doctors, Dr. R-U-Awesome, took a walk with me before my major lymph problem a few days ago and I was surely short of breath, and then, you know, I had the problem. (which I know is still mysterious but I do not not not have the brain power to explain that medical stuff tonight). Dr. R-U-Awesome also has always had the impression that I am som

One Night Only, One Night Only

Hello CGers!!! It's me. Boldly, bravely, I let my Dad bring me my laptop for tonight. I have been enjoying a computer hiadus, but wanted a little time to write to you y'all and doodle on internet. Who knew I could go a whole month without my laptop? WHO KNEW!? Well, I've been busy. And tomorrrow is already my transplantiversary!! ( one month). My surgery started on July 27th and ended on July 28th! I know there is a lot to explain about all that has happened but I'm not gonna handle all that tonight. Just recent news and such. So, it looks like I hope to get out of the hospital next week if we can finally figure out everything with my lymphatic system. I started eating this week, and long and short, it agravated my lymphatic system a bit, again. (Not at all like before, but still, there was fluid retention and other random details.). So, 4 more day of IV nutrition and clear liquids for me, and then we'll try, I don't know, eating again. The IV nutrition keeps m

Fwd: artsy morning photo

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:) ------Original Message------ From: < 8438222929@mms.att.net > To: < Bethpetersboston@gmail.com > Date: Saturday, August 21, 2010 9:35:28 PM GMT-0500 Subject:

Update written by Sister "CysticLady"

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CysticGal, August 19, 2010, 9:54 AM, ICU Step-down So much has happened since I arrived in Boston last Friday!  CG had about 40 lbs of fluid on her!  She was a puff-mellow.  Now, as you can see, she is pretty close to her skinny minny self.  Yesterday she had a little bit of a protein shake, 2 tablespoons, and she's excited to be closer to those pudding cups, which you can see are stacked up and ready for when they say the word.  Just, don't get one of your fingers in between her mouth and pudding cup, you may never see it again. CysticDad hooked her up with an awesome computer situation.  If you could see that old laptop from 90s that CG had been writing this blog on, you wouldn't believe it!  CG's room is full of your cards and postcards.  Thanks so much!  She loves them!

wed

good day overall! i am out of i c u. i did 2 short crappy walks, then got some blood transfused since my blood counts were so low,then took good walk! less pain meds too! still looking to and hoping for no surgery! hoping to try eating something tomorrow! love to you all!

yay today

after a pretty rough pain day yesterday,today, much better! slept 5 hours straight over night! news! no surgery today or maybe ever!! pray for no more cg surgery! and and and i get out of i c u, to i c u step down, after 20+ days! and, the fluid is almost gone!! yay yay yay, cg

new try ah

update_ yesterday was awesome, most exercise yet, and lost 5 liters of fluid, which actually is a little too much from a too long awesome walk! so, i got to drink a whole rootbeer, and do the bear hugger warmer blanket all night! slept super! today, woke, my epidural is leaking! must fix. good practice weaning off pain meds. don't want to stay here longer just for he pain, wanna go home after next surgery, which may be delayed or simplified! yay! cg ---------- Sent from AT&T Wireless using Mobile Email

sunday

---------- Sent from AT&T Wireless using Mobile Email

sunday

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cg photo upon demand. Me, yesterday with first post tx stuffed thing! Daisey, the boy, a gift from sister! Also, quite rock star.
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cg photo upon demand. Me, yesterday with first post tx stuffed thing! Daisey, the boy, a gift from sister! Also, quite rock star.
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cg photo upon demand. Me, yesterday with first post tx stuffed thing! Daisey, the boy, a gift from sister! Also, quite rock star.

say what you need to say

a whs alumni shout out. sometimes i cry at night over all our loved that have died after enduring this to be with us some more. thank you to these angels who visit me tonight, ---------- Sent from AT&T Wireless using Mobile Email

update from reall cg

i am having the best day so far since transplant, pain free, lots of walks and lunges, shedding a kot of the excess fluid, drinking only cofee . . . i harassed for this, and it is black, and i live it. sister is here and being hosted by my bestie t_money, and they are in charge of my rock star beuty rituals even during this, must feel rock star. liove each card from around the world, love and thank you all, still looking at surgery for tuesday to finish the lymphatic repairs, but progress has been made today! thank you all! thanks to my loving parents. they overwhelm me with their love support and hugs. cg ---------- Sent from AT&T Wireless using Mobile Email

Fwd:

thank you for all thelove, prayers, support. keep it comin'! i am so grateful! ---------- Sent from AT&T Wireless using Mobile Email ------Original Message------ From: < 8438222929@txt.att.net > To: < Bethpetersboston@gmail.com > Date: Thursday, August 12, 2010 7:42:41 PM GMT-0500 Subject: I'm good after surgery last night. Walk and lots food today. Then a low blood pressure and okay now after blood transfusion, n -- ================================================================== This mobile text message is brought to you by AT&T

CysticGal Birthday

Hello again, this is the sister.  First things first, tomorrow, August 11th, it CysticGal's 30th birthday.  She's still in the hospital, and we don't know when she will be able to go home. Today the doctors came by and said that they wanted to do another thoracotomy and attempt again to block off this lymphatic duct.  They feel that it didn't completely work on Sunday.  They want to do the surgery tomorrow.  Please pray for CysticGal.  Please also pray that the medical staff caring for her can get this right.  Theresa

FW:(No Subject)

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Patricia Coorey Wrote: Beth in the bear hug!

The Story in Steps (with dates) of CysticGal's transplant so far....

This information came from a text message conversation between me and CysticGal tonight.  It is a timeline of her transplant so far, in her words (with some edits from me): Tuesday, July 27, 2010: CysticGal is called for transplant and goes into surgery just before 9 PM. Wednesday, July 28, 2010: CysticGal comes out of surgery around 5:30 am and everything has gone really well. CysticGal comes off of the ventilator around 11:30 AM. Thursday, July 29, 2010: CG is sitting up in a chair, has good energy, eating Friday, July 30, 2010: CG began retaining lots of chyle , and her body temp is really low at 95F.  She still felt good, walked around a lot. Saturday, July 31, 2010: They do more tests and find that there is a tear in CG's lymph system that runs down her abdomen.  This tear is crating fluid retention.  The chyle fluid is everywhere.  She starts to have a lot of pain and her blood pressure is becoming erratic going from very high to very low.  Her temps drop real

it's me

it's cg here. i think you already know that i am having another major surgery that involves opening my chest again, and trying to fix all my problems. i'm not going to lie, the past week or so has been very painful and traumatizing to me in many ways. i cannnot thank you enough for support. love. and kindness you have shown. pleases keep my parents and best friend trish in your hearts, as well. they have been with me every step through things i never dreamed i'd experience. please. also take bit of your day today from 10 to 9 or so to send us peace, healing and love. you can do this through simple prayer, a letter to the universe or me, or thinking of an image. i have an image picked out, but i will keep it private for now. i love you all. please no calls or texts today. but email is fine. love love and gratitude. ---------- Sent from AT&T Wireless using Mobile Email

Another Day... Another Procedure

In order to attempt to further reduce the amount of lymphatic fluid in CysticGal's pleural space (Chylothorax), today they are sending her down to radiology where they will place a small chest tube that can move around and drain out the extra fluid.  I really hope this helps her.  Don't forget your postcards!!

CysticGal calls for Postcards! Postcards!

The last few days have been rough for CysticGal, she landed back in the ICU, had a code, had another surgery (in some order)...  She's bummed and back at square one.  But what do we remember about surviving a 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. Anyway, back to the topic.  CysticGal would love it if you sent her postcards from where you read her blog.  You can send them to this address: M.E. Peters 305 SCHOOL ST # 1 WALTHAM MA 02451-4326   Thanks to all of you for your continued support and readership.   CysticLady (Theresa)

CysticGal Update by CL

Hey everyone, sorry for no post last night.  I had a sleep study and had no phone or anything all night and all day.  CysticGal had a bad time yesterday.  They tried to embolize her leaking lymph node, and it didn't go very well.  She ended up back in the ICU.  Today they tried again, and she's doing much better.  CysticMommy flew back up there.  Now, hopefully without all of that lymphatic fluid all over the place she will feel better and start recovering again. xxoo

CysticDad’s Guest Blog

First thanks to CG for allowing me to guest blog tonight. I thought I’d start with a top ten bits of CG trivia that she might not have mentioned before. I hope this doesn’t embarrass her too much. Then I re-post my Top Ten wish list now that she has had her transplant. CG is an excellent swimmer and was a life guard and swimming instructor for many years. Teaching children to swim is a specialty of hers. CG’s start and perhaps strongest theater/drama skill is actually acting. She won the “Best Actress” award as a high school Senior. She decided to pursue directing and teaching drama as a profession because she found acting too physically demanding due to her CF by the time she entered college. Plus she wanted to actually earn a living and not be poor. CG’s favorite playwright is Samuel Beckett and perhaps her best work was directing “Waiting for Godot” to a packed house while an undergrad at the University of Illinois. CG started teaching acting at age 10 and has never stopped

Re: Cystic Gal

---------- Sent from AT&T Wireless using Mobile Email ------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 /////////////////////////////////////////// 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 /////////////////////////////////////////// CysticGal Q&A Sessions Posted: 02 Aug 2010 09:26 A

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 empt