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Showing posts from August, 2010

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

CysticGal Q&A Sessions

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

CysticGal progress by CL (TP)

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