Tuesday, August 31, 2010

news and yoga

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 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:

Cystic Gal's Guide to Post-Transplant Bed Yoga

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!!!



Monday, August 30, 2010

post tx milestone:

sleeping on one's side.

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.
CG out.

Saturday, August 28, 2010

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 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

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 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.

Goodnight, CG

Sunday, August 22, 2010

Saturday, August 21, 2010

Update written by Sister "CysticLady"

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!

Wednesday, August 18, 2010


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!

Tuesday, August 17, 2010

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,

Monday, August 16, 2010

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!


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Sunday, August 15, 2010

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

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

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,

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Saturday, August 14, 2010

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.

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Thursday, August 12, 2010


thank you for all thelove, prayers, support. keep it comin'! i am so grateful!

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------Original Message------
From: <8438222929@txt.att.net>
To: <Bethpetersboston@gmail.com>
Date: Thursday, August 12, 2010 7:42:41 PM GMT-0500

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

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. 


Sunday, August 8, 2010

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 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

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.

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Saturday, August 7, 2010

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)

Thursday, August 5, 2010

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.


Tuesday, August 3, 2010

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.

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."

Re: Cystic Gal

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

Cystic Gal

CysticGal Questions - Answered (mostly)

Posted: 02 Aug 2010 01:41 PM PDT

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

Hey !

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


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

CysticGal Questions - Answered (mostly)

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

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

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

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

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

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

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

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

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

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

CysticGal Q&A Sessions

Hey !

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


CysticGal progress by CL (TP)

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