Tuesday, November 23, 2010
Thursday, November 18, 2010
"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?
Tuesday, November 16, 2010
Monday, November 15, 2010
Dear Hospital Place;
Today was supposed to take 1-2 hours . . .
. . .a fracking nightmare.
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! :)
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 media contacts c)randoms with their disease or transplant type looking to support or criticize d) anyone who they write specifically about who has the sense to google themselves from time to time
The hospital would not have monitored her tweets and blog if she hadn’t mentioned them by name (the hospital, doctors, or staff). So- after that point, its fair game. I was contacted by both of the hospitals I was working with, by their PR departments, to thank me for my blogging. That is because, however, I only mention names when I’m saying something nice, and never mentioned my hospital until it was “out” on fb and some other sites due to the popularity of my site, and the crossover in my readership between real-life friends and internet friends.
What do you think, readership? Do you think people should talk openly using names of their caregivers? Or not? What do you think of my policy to not use names of doctors at all (though my Super Secret Pseudonym CG System is not that hard to decode if you do know the names of those involved)? Do you think bloggers should ever mention their care centers while being cared for, disregarding normal concerns that fabulous cystic gals like me have, such as stalking by strange internet personalities, haters, exes, futures, and religious fanatics (that, too, is another story) while they are a-healin’.
What do you think, oh loyal readership?!
P.S. Readership up to 180/day on the low end! Woot Woot!
Sunday, November 14, 2010
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
Saturday, November 13, 2010
Friday, November 12, 2010
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 one is less than 15 mins? Not at all. Many CFers have never sung onstage in front of hundreds of people, or climbed a latter with one hand holding a twenty pound theatre light in the other, or lifted a stage curtain into the fly. I don't think THOSE people are failures, so if I never run a marathon for CF, why am I?
Okay now I'm a ranting so I gotta cut n past this to CG. Goodnight Josh!! >>
Thursday, November 11, 2010
(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 said the typical "so and so suffers from CF," and I was like, "why is it always 'SUFFERS'?"- even when the article is about how someone is kickin’ butt? Can these wordsmithes* really not think of a way to write an article that raises awareness/prompts donation without defining a teenager in an article who is on a sport, in the arts, doing treatment (sound familiar?) as a SUFFERER? Why not highlight all s/he does and congratulate him/her for being wise beyond their years, and committing to health EVEN IF there are ups and downs in a this progressive illness?!
Grr. I love your soap boxes. I always try to climb up and join. >>
*the term wordsmithe is used very broadly. Not everyone can be the true wordsmithe that KRooney is.
Tuesday, November 9, 2010
A journey in cut and paste
Brandon: is that a recent pic in your fb profile?
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 the main airway to my left lung is swelling and irritated- not infected or rejecting though- so i still have the wheez
Brandon: yeah i had that basically sorta like a crazy wheeze, like a kazoo right?i have stents in my airways
Mary: yeah- worse wheezing than my old lungs. if i had a wheeze then i would just cough up the junk and it would stop. this is just unstoppable.
Brandon: yes i have that
Mary: you do? they might do that to me if it does not resolve. what kind of surgery was it to put them in?
Brandon: bronch, bronch in the or for stent placement...the wheeze basically comes and goes now for me, not ever as bad as it was the first 3-9 months, but it will come and go
Mary: hmm. blah.
Brandon: yes, not gonna lie, it sucks, but you do get more used to it
Mary: tho i have come to like bronchs since they do all of mine in the OR and i get such good sleep that day and next :) is it wrong?
Brandon: hahahaha, not at all, they aren't bad right? piece of cake really
Mary: no. i guess i behave pretty inappropriately under conscious sedation, which they haven't told me outright, but i read in my chart, "ms. peters has trouble relaxing during ... and attempts to "help" or gets very anxious and angry." haahha
Brandon: hahahahhha, i have said some things to them, a few times, one time i was waking up, with the thing in, that was not good, i remember it, but it was like a dream, no big whoop. i bitched once because i woke up with baiscally a fat lip, i was all "yo, nurse and he-nurse, take it easy on the lips, i'mma delicate flower"
Mary: haha. i think i hit on dr. ------ once. whoooops
Brandon: hahahaha well i just want to tell you
even if your face is alittle pudgy, that pic is just awesome
Brandon: i feel like cfers get their personalities back post tx because you have the energy to be all that you really are and i love it, it makes me happy, you look awesome
Mary: i feel like that= like its two years ago- instead of wanting to be home all the time, i want to go out all the time.
Mary: instead of wanting to be in jammies, i want to get dressed up
Brandon: it's awesome right? hahaha me too
Mary: i feel like i'm 20 again.
Brandon: you know what the best is?
Mary: i'm like WHERE'S THE PARTY AT?
Brandon: showering and getting ready in like 20 mins. that's the shit
Mary: no SHIT
Mary: i totally agree
Brandon: i would have to be up literally 2 hours before whatever it was i wanted to do to shower and cough and rest and get dressed and cough, you know the drill, fucking nightmare
Mary: that happened on accident like a month ago. i woke up late and had to get my prograf level done. i was jammies to beautiful in a half hour and i was like HOLY SHIT, I HAVEN'T DONE THIS SINCE ... GRADE SCHOOL
Brandon: hahaha, it's awesome right
Mary: it's totally awesome. i'm trying to get over my habitual dread (dredd?) of showering. i keep thinking, "oh jesus i have to shower now." and in reality it is NOT a hassle and actually nice again.
Brandon: i know--i'm so happy--you waited so long and were so good
Mary: it seems true though, that as soon as you get fed up waiting and are like FUCK THIS SHIT you get called
Brandon: have you taken care of that #1 on your list?
[THE NEXT TEN LINES OF TEXT HAVE BEEN EDITED BECAUSE I AM A LADY!]
Mary: dude i totally want to post this convo on cysticgal with the title WHAT POST-TRANSPLANT PATIENTS TALK ABOUT
Brandon: go for it-- you know, as much as i wished i could have experienced life without cf, it has shaped us, and for the better imo, and i think that few people get to experience the joys we do, for such normal activities...maybe there's a degree of sadness to that, but i personally embrace it
Mary: it is really great--on friday i weent to a football game at the h.s. i used to teach at (still friends with all the teachers) and - after, i was walking back to my car that waas parked FAR away (not a problem!) and stood there watching a bunch of tiny kids playing in under the football lights while their parents waited for the team to be ready to come home.it was just this moment of like I CAN BE OUTSIDE IN THE COLD FALL WEATHER, AND WALK TO MY CAR, AND TAKE MY TIME, AND NOT BECAUSE I'M GONNA PASS OUT!
Brandon: awesome--i remember, you posted osmething about being able to walk and talk at the same time, and it sounds like a joke...but as we both know, not a joke, not a joke in the least, boy is it nice to stroll along chatting
Mary: totally. and to be able to walk as fast as your friends or family without thinking I MIGHT DIE RIGHT NOW
Brandon: hahahaha yes
THIS HAS BEEN A RANDOM SAMPLING OF S. POST-TX CFers TALK ABOUT, TUNE IN AGAIN SOON.
Saturday, November 6, 2010
Wednesday, November 3, 2010
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.
Tuesday, October 19, 2010
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!
Me as a turtle.
Monday, October 18, 2010
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,
Tuesday, October 12, 2010
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?
Wednesday, October 6, 2010
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/ 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.
Friday, October 1, 2010
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?
Wednesday, September 29, 2010
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!!! email@example.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 disappointment.
And yet, I leave you this:
Monday, September 27, 2010
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 for this mask up to meet up!! Pics will be taken.
I took two videos today but did not upload them yet. Soon!
Here is an old picture of me from approximately 1997: Shout out to KiMindy.
Sunday, September 26, 2010
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. 27th because by then the med team had finally figured out that I needed a long “healing” time after my FIVE FRIGGIN SURGERIES (even though they call 2 of them procedures).
Tonight, I have to go to bed early because . . . I’m sleepy. I leave you with this.
Friday, September 24, 2010
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?
Wednesday, September 22, 2010
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 ..."
Monday, September 20, 2010
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 the dollar store (we love a bargain)-and both were PACKED, so I did wear my mask.
In other news, I was exhausted today and am not sure exactly what was wrong. The day started with me eating breakfast and stupidly taking my morning pills with a coca-cola. WTF was I thinking? I got immediate awful heartburn, so I did what I love to do most, popped a tums. PROBLEM! I had just taken my CellCept, so my heartburn turned into nauseousness and general OH LORD WHAT HAVE I DONE? There was a moment that came when I could have puked, and I should have, because the next hour was a hell of stomach cramps and general OH MY.
Then I did my exercise, but the rest of the day I was exhausted and I had the sweats and the cold/hot/cold/hot during my nap and all day. Theories:
Still tired from Saturday
Long lingered drug interaction
Fighting off a bug
Adjusting to new Prednisone dose
The DTs from not taking any oxycodone today (and I did feel better after I took some….)
All of the above and maybe just a bad day.
Okay, this post has gotten long enough! Goodnight, cg
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!
Friday, September 17, 2010
Thursday, September 16, 2010
Sunday, September 12, 2010
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 looks like a baby bird made footprints across from stomach from the drain scars and their stitches' scars. But they are going away.... they will go away!! My BIG scar still has some of the staples in it, so it has not yet begun to be potioned or lotioned, but I think it's going to heal very very well.
So that's my story for today. Goodnight!!
Tuesday, September 7, 2010
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:
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 in my old lungs, so we have to make sure my new lungs do not get any sort of infection.
The result is that I take a carefully calculated chemistry of immuno-suppresant drugs, while taking anti-infective drugs like antibiotics, anti-virals, anti-fungals. There is even a mouthwash!
That is the medication side of the infection/rejection balance. The practical side of it is to limit other ways that the body can develop rejection or infection. The first topic is easy to understand once you start to think on a germy level. Avoiding infection: avoiding germs from infected people, food, surfaces and, well, air! Of course, all people avoid germs. But, post-tx, if you are immuno-suppressed you are more likely to get severely ill from the smallest cold bug or skin rash, and your body is like a sponge waiting for these germs.
I can't go in crowds at all, and a crowd is defined as a place where you can't control how close people are to you. Standing in a line, shopping at a busy mall, going to a restaurant at peak hours- these are to be avoided.
Limit germs entering my home. My house is gong to be like a little CG Germ World, and I won't be having many people over to my house, because they bring all their germs into my air space, furniture and etc. So no big keggers for me anymore (?)
Limit contact with sick people, people who were just sick, people who are incubating a sickness, people who just got off a plane. This means that I DO NOT want to see anyone who has felt sick, had a sore throat, fever, cough or sniffles in 3 straight days. Similarly, if a household member has been sick- I don't want to see anyone from that household. You have to live in a well-house for 3 days before I want you breathing by me.
Mask! You've seen my sport the surgical mask before. I will wear it when situations arise that are germy. For example, if I have to go clothes shopping, I will mask-up. If I go the the grocery, mask-up (grocery stores are the Mecca of germs). If I end up in a crowd, have to take an elevator, or etc. - mask it up! This is most important in the first 6 mos- 1 year.
Hand washing and anti-bacterial - I already sport the anti-bac, as you know. You will see even more of it, and I will encourage you to use it to.
Closed air places- With other people in a car, I will want to crack the window, and I can't ride on a plane for a year.
Hugging and lovey-doveys: I am usually an affectionate person, but I am not going to be huggy or kissy or cuddly for at least a year. Don't take it personally, but I do not want to hug you or get any kind of kiss on the cheek or forehead from you.
Random making out with strangers- apparently this is a hobby I have to forego. just kidding
Ok, enough for tonight, more TOMORROW, TOMORROW, I LOVE YOU TOMORROW.!
Monday, September 6, 2010
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 only at about .6miles per DAY. Of course, when I ask about it here, I get a lot of answers that they are happy with my progress, and I just need to improve every day, but I wonder, isn't that just a little bit of walking? I hope to be walking 1 mi. a day by the end of the week, and then slowly work on merging my 3 walks into one big walk. The good news on the walking is that I am walking at a normal pace now, as opposed to last week, and I can talk and walk at the same time which is AMAZING, and makes me less stressed out about walking with people.
For years, I hated walking anywhere with anyone because it is awkward if you don't talk, but I was not physically capable of walking and talking. So, it was anxiety provoking. Also, I sorta feel like a zoo animal. But lately my parents and I have been walking and chatting and its been no big woop- and I haven't needed to stop either.
I miss my cat so much that I could cry. I hope to see her soon.
Saturday, September 4, 2010
Friday, September 3, 2010
very sleepy at the end of days since i'm doing more workout. will try to post in day light tomorrow.
Thursday, September 2, 2010
but am sleepy.
so sleepy forget nouns.
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
. . .
Wednesday, September 1, 2010
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 list online that I can just cut and paste. Do any of you bloggies have a good post I can refer to or know a site that I can direct readers to about the changes made to avoid rejection/ infection in the first year?
Instead of brilliantly making my own list, I'magotobed.
Tuesday, August 31, 2010
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.
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 retention who can't live their own legs off the bed can do yoga. The thing about yoga is that a big component is muscle isolation, being able to stretch and use individual muscles, no matter how small the stretch or use, to keep the muscles warm, flexible, and pain free/ pain-less. The past few weeks, I have been practicing what I think I might have invented: Bed yoga. This is yoga you do in the bed, in case you get so tired that you have to go to bed immediately - voila - you are already there! Or, if you have so much equipment that doing yoga out of the bed is not safe (was true for me even 2 days ago). SO- the way you do bed yoga is:
a) pay attention to your doctor about what muscles you're not supposed to be stretching and DO NOT stretch them. For example, my sternum is healing. There is NO stretching off right and left of center. No no no.
b) get lots of pillows for your bed including one hard neck/ lower back pillow.
c) start by isolating muscles from your toes on up to your head. Do simple stretches, or, in my case, attempts to lift/move/manipulate each muscle to a reasonable degree of stretch BUT NOT PAIN. Hold for 5-10 seconds while practicing good yoga breathing (which I had no idea was SO VERY GOOD until recently!! Yoga breathing on 40-20% lungs as the years went by is nothing compared to these bad boys I have now!!)
d) complete simple stretches if you can like drawing your knees toward your chest, attempting to sit "indian style," straightening and bending knees.
e) This is also a good time to massage the muscles and check out any sore spots or pains you may have.
f) ignore your whole abdominal area because it's all traumatized and you can't really help it now and so there.
g) you should be working toward a fuller range of movement in your arms and shoulders now that you have new lungs! Practice rolling shoulders forward and back, forward and back, slowly. Always end with them back, of course! Practice making the Y from the YMCA dance. Practice holding it for 10 seconds and breathing deep into your new lower lobes. It's super!!
h) This is a good time to put your hands on your upper chest and feel how much air you are moving when you breath slowly and deeply. Similarly, on your middle back.
i) no comment on neck situation yet, as I've had a line or 2 in my neck this whole month and haven't really wanted to do much in that area.
j) if you do yoga in real life, you can try some modified poses while laying down, making sure that none of them are weight-bearing. Go ahead, think of like one pose and think of how/if you could do it or any part of it, I dare you.
j) end by laying down- you're in bed! do some more yoga breathing and maybe it's time for a nap!!!
THANK YOU FOR READING POST-TRANSPLANT BED-YOGA BY CYSTIC GAL.
Monday, August 30, 2010
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!
Sunday, August 29, 2010
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 future life of hosting monthly card games when I move into his building.
This post is random
Today was a good day.
Saturday, August 28, 2010
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 some kind of Workout Crazy person, which makes my mother laugh, I'm sure. In any event, I was on walking restrictions but
wheelchair crazy with my mother!!!
we went outside - i went outside for the first time in a month!!! With all my tubes and round-the- clock-IVs and general merriment before, it hadn't even occurred to us. Tomorrow, outside again, I say!! Outside everyday!!!
The smell of the cheese soup at au bon pain almost made me cry, but other than that, it was glorious to go outside.
Well now I have filled a screen and my blog post is over. I have to go to sleep. There is a big day of short slow walking, and non-digested nutrients, for tomorrow.
Thursday, August 26, 2010
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 me going pretty good, I'm not even hungry except in my mind. - So alas, do not worry, I am not suffering in any sort of hungry way.
I simply cannot wait to go home and sit on my own couch, hang with my parents in my own house wearing my own clothes with less wires and crazy tubes coming off me, use my treadmill, eat some food, hang with my mom and do weird facials, go for a walk OUTSIDE!, sit on my porch with no O2, see my cat, see my cat, see my cat, walk to the grocery store, etc.
My lungs are superb. I think they are boy lungs, but who knows? They are strong and throughout this whole mess, they've been in tip top shape! My resting o2 is usuallly 97 or 98 but if often 100! When I exercise it is always 100 (that's right, it goes UP during my exercise). It has been dreamy to sleep with no bipap, and no oxygen on.
I am having way less pain in the past few days although we uncovered some of the reasons that I was having such erratic pain differences with excercies (another post for that, my friends).
The nurses at Brigham and Women's are f ing superb. I am in love with all of them. They are all so wonderful and fabulous at their jobs. I literally have only had like 3 momentary experiences where I was like, WTF was that? The rest of the entire month, every minute, it has been wonderful to be taken care of here.
With all of my problems, I am getting to know the team here very very well. So, now, instead of trusting just 2 of the docs, I trust about ... MOST of them. Which is wonderful.
I am so thankful to everyone who has been writing comments, emailing, and who sent postcards, even asking family and friends to send post cards. I must admit I got one creepy one, which will be the subject of a later blog post- but other than that - I still love them!! It's not too late to send one. It's crazy to realize where some of you bloggies live. I always think of you living 'IN COMPUTER." I guess that is incorrect.
My family and friends and all of you have been so amazing. I have never felt more loved and I appreciate every ounce of it.
So many posts to follow, but I'm giving my computer back tomorrow, so probably not another long one until I am home . . . ! I must stay in the zone of healing, walking, not eating (?) and such.
I have unguarded comments for now. Wish I had before my tx, but alas, I just did it. All of your comments will now appear moments after you write them without my review. Thus, I apologize for any spam/porn/random b.s. comments that appear. I will try to delete them.
q/a: Everyone wants to know some facts:
Do I still have chest tubes in? Yes, 5 bulb thingies.
Am I on o2? No.
How far am I walking? Only about 1/3 mile per day but that is a long long story and do not leave comments about it.
Did you walk up some stairs yet? Yes. It went well.
Are you still a rock star? Um, totally.
Sunday, August 22, 2010
Saturday, August 21, 2010
Wednesday, August 18, 2010
still looking to and hoping for no surgery! hoping to try eating something tomorrow!
love to you all!
Tuesday, August 17, 2010
yay yay yay,
Monday, August 16, 2010
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Sunday, August 15, 2010
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,
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Saturday, August 14, 2010
thank you all!
thanks to my loving parents. they overwhelm me with their love support and hugs.
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Thursday, August 12, 2010
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I'm good after surgery last night. Walk and lots food today. Then a low blood pressure and okay now after blood transfusion, n
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Tuesday, August 10, 2010
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.
Monday, August 9, 2010
Sunday, August 8, 2010
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 really low and they begin to warm her.
Tuesday, August 3, 2010:
CG has bronchoscopy and it went well. They schedule a procedure to embolize the lymph tear for tomorrow. CG has horrible pain overnight. Her blood pressure is really really low as well as her body temperature.
Wednesday, August 4, 2010:
They give CG conscience sedation for her lymph node embolism. Half way though her blood pressure bottoms out and they bring her out of sedation. She had to so some crazy survival breathing. CG dropped consent and they didn't finish the procedure because her blood pressure and temp and oxygen was not stable.
Over the night she had horrible pain. Around 10 CysticDad went home. Half an hour later, CG's temp drops to 94.5F, she was sweating and draining and in the worst pain ever. They paged the surgeon and head of tx medicine for them to come and assess the situation, and CysticGal codes. One of the doctors called CysticDad back. CG's blood pressure crashes and she passes out to wake to many people all around her trying to put lines in her. They finally get some lines in her and GC doesn't remember much after that.
Thursday, August 5, 2010:
This day they did attempt to embolize the lymph node while Beth was awake and they used "some crazy awake psycho drugs". It went well. It seemed to work at first, but alas, no, it did not.
Friday, August 6, 2010:
GC is hopeful that the procedure the day before worked, but they find that it did not, and plan to go aspirate the fluid left out in radiology the next day.
Saturday, August 7, 2010:
They find CG has at least four loculated areas of chyle fluid around her lung, and the doctors decide not to do radiology procedure. They decide instead to go in for surgery on Sunday and fix everything.
Sunday, August 8, 2010:
Today they opened half of CG's chest. They fixed the lymph node by suture and crazy glue. They also drained the pockets of fluid. It went well. Now CG has double scar pain and general trauma to her chest, abs, and sternum.
Sister says she is recovering well from today.
Thanks for all of the prayers and well wishes
i love you all. please no calls or texts today. but email is fine. love love and gratitude.
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Saturday, August 7, 2010
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:
305 SCHOOL ST # 1
WALTHAM MA 02451-4326
Thanks to all of you for your continued support and readership.
Thursday, August 5, 2010
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.
Tuesday, August 3, 2010
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.
CG’s favorite cartoon character is Winnie the Pooh. Her apartment looks more and more like the 40 Acre Wood every day.
Her favorite vacation was when CG and CysticLady took a cruise they titled “Project Cruise Hotness” in 2008. CyticDad almost had a heart attack and thank goodness what goes on, on a cruise ship, stays on a cruise ship.
Her favorite meal is my Thanksgiving Turkey Dinner. Well anyway, it’s my favorite.
I taught her all of her dance steps. That’s my story and I’m sticking to it. But seriously she finds dancing expressive and important. Try it sometime, you might like it too.
When CG was a HS Sr we bought brand new beautiful white bur bur carpet for the family room. One week later when ironing her skirt for a speech team meet she put down the iron to answer the phone and returned to find the iron burned right through to the floorboard. Thus she canned the now family famous line “I am so, so, so, so, so, so sorry Dad.” Yea right, just pay to have it fixed or win the meet and all will be forgiven.
Her favorite performance was Steppenwolf Theater’s 1997 production of “A Streetcar Named Desire” staring Gary Sinise.
Cysticdad's Top Ten Wish List Post CG’s Transplant
10. Hear the words "She's off the vent and sitting up, breathing on her own, and you can see her now." ……. DONE !
9. See her celebrate her 30th Birthday next week unlike her tragic 29th.
8. Once again hear that incredible laugh that rattles the windows as she laughs at one of my stupid jokes.
7. Walk together all the way across the Ravenel Bridge from Mt. Pleasant to Charleston and back.
6. Ride our bikes all the way to the end of Isle of Palms and watch the dolphin frolic in the inlet between Isle of Palms and Dewees Island.
5. Take a cruise with the whole Fandamily.
4. Take CG, CysticLady and Bruzzy to Wrigley Field, sit in our old season ticket seats behind first base, drink a beer, eat a hot dog and yell at the top of our new lungs "You're a Bum!"
3. Sit in the middle of the audience and watch CG’s production of "Death of a Salesman." “I’ll go to Boston, they know me there, and I know I can get an order.”
2. Watch CysticGal and CysticLady compete in the 2012 Transplant Games.
1. Go to Walt Disney World and in the boat ride across the lake from our resort to the park hear CG yell to waterskiing Donald duck, "Hey Donald, it's me Beth."
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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
CysticGal Q&A Sessions
Posted: 02 Aug 2010 09:26 AM PDT
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
firstname.lastname@example.org with a question you'd like answered, and I will find
out and answer it on the blog!
CysticGal progress by CL (TP)
Posted: 02 Aug 2010 07:32 AM PDT
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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Monday, August 2, 2010
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.