Today Blew

Disclaimer to friends and family: Tomorrow I have a bronchoscopy, a procedure required many many many times post-transplant, that is not a big deal most of the time. Tomorrow is one of those times. In fact, I'm sorta looking forward to it because I haven't been sleeping well lately, and surely I will sleep well tomorrow, day and night! :) Today's annoyance at the hospital was not medical, it was ... procedural / paperworkurital / red-tape-tastical. Read the whole post- see how there's nothing in there about anything being wrong with me?   Everybody's blowin' up my phone before they read the email. :) Love you guys!

Dear Hospital Place;

Today was supposed to take 1-2 hours . . .

[approx 300 words have been edited out for my own protection,

but I will email them to you for your amusement, followers.]

. . .a fracking nightmare.

Sincerely,
:)
Beth Peters

Holy Canoli Cystic Gal is the Backup: By Cystic Lady

Tonight at 6:36 PM Cystic Gal was called by Brigham & Women's as the backup for lung transplant.  She was called into the hospital soon after and is accompanied by a friend, waiting to see if 1) the surgery is a go, and 2) the first person in line is not able to have the surgery.  It's hard to say how it will turn out, but please send Cystic Gal the good feelings and energy and prayers or whatever you like to send her.  She has had a bunch of blood work. 

In a related story, Cystic Mommy fell down Monday on a bike ride with Cystic Lady (me) and broke her right wrist.  She is right-handed.  She will have surgery, probably Thursday to fix it.  So, if the Cystic Gal lung transplant is a go, Cystic Dad will fly to Boston on the earliest flight at 6:00 AM tomorrow, and I will take care of Cystic Mommy's surgery.  Can you believe it!  I can, actually today when I was on chat with L-UberComputer, I mentioned this very thing.  I might have willed it! 

As of this post there is no new news, but I have the phone nearby. 

Transplant Woo, Cystic Gal Woo!  (Stolen and modified from an old chat when Sammy Sosa played in Chicago in the 90's.)

Top Ten Things That Don't Completely Suck About the Hospital

Here I am in New England and in the big house again. I'm taking a break from my usual wry sensibility of you-know-what-blows humor, and taking a page out of Ronnie's book to write about ten things that I am actually thankful for when I'm in the unnamed hospital here.

Top Ten Things That Don't Completely Suck About the Hospital

1. Stocking up on free prescriptions. Ignoring the fact that I pay out the ass for my so-called "Cadillac plan" of health care, I enjoy the fact that infection control protocol at my hospital provides me with a shiny new inhaler every day.

2. Some cable stations I do not have at home.

3. In so much as I can navigate the menu, and ignoring item listed in #1, free eats, especially widely available desserts.

4. Respiratory therapists I really like!

5. Unfettered access to Law n Order episodes 24/7, without the shaming eyes of other humans seeing how many hours I can enjoy as background entertainment.

6. Free, though cheap, stethoscope (see item #1 for further social commentary)

7. Endless supply of super friends and loved ones that come-a-callin'.

8. Easily slipping into the "I'm on a spa retreat!" subtext as I enjoy doing my nails, writing many poems, and catching up on my correspondence.

9. Much time for online obsessions of late: vistaprint.com for Patient Press, and overstock.com for much-needed, though too-cheap-to-buy-outright, items such as bipap-friendly pillows and matching springtime bedding, new (pretty, 100% mold and old germ free) shower curtain for after transplant, seasonal purse (I allow myself to buy one purse a year. I believe this is a money saving rule in comparison with my female friends and moreover, foes), new watch as I developed allergy to cheap metal base of my former 4-year-long watch. (p.s. tell me again why my blog does not enjoy endorsement dollars?)

10. Research for future writing projects: Priceless.

Hospital Haircut!

If you're in the hospital and feelin' sorta frumpy, try getting a haircut! I've been here for a month, and before that, I had only been out a few weeks! I feel like I've been here since August and my hair was suffering! Until today, I got a hairstylist from a shop in the hospital's neighborhood to come to my room and spruce up my 'do:

Word on the street is I might get out of the hospital tomorrow! YAY! I will start a pulmonary rehab program next week, and spend some much needed time at home with my cats and my Mom while wait to get the call to come back in for transplant surgery!! I hope it comes soon!

More soon,
CG

You Can't Touch This: Schkeev!

Attention many new readers, in case you haven't read the disclaimers, the below post contains bad language in the original spirit of the original CysticGal blog: )

Also, want to read some funny current thoughts by CG and often to CysticLady (my sister), read the tweets to the right!
****************************
The thing I hate the most about being in the hospital is all the excessive touching. I don't mean the doctors listening to your lungs. I don't mean the blood draws. I don't even mean the surgeries. I mean the other types of touching that you are subjecting to and cannot get out of without literally batting someone away or being a total biotch.

There is this one respiratory therapist that is actually quite good at his/her job. I'll call him/her Respie. Respie is jovial, friendly, and quiet when I don't want to talk, but happy to converse if I'm for it, while we PT. S/he works around my snarky approach to the hospital scheduling. S/he is one of the few people I have given "it's okay to wake me up" privileges. I like Respie's PT so much that s/he can even come and wake me up if we have agreed to PT, if I put the "PATIENT IS SLEEPING, PLEASE SEE THE NURSE (subtext: or I'll kill you)" sign on the door. But, here's the thing. When Respie gets distracted, s/he leans a huge belly onto my back. It schkeevs me out every time. Schkeev!

When doctors are listening to my chest - which is annoying enough, they often place their other hand on my shoulder or some other random part of my body. Why? Back the fuck up. Schkeev!

When I am having a coughing fit, random people that are in the room cleaning it, or changing my portable oxygen tank, or delivering food, will attempt to touch me. Usually, I use my CysticGal guns to POW! Lay them out flat! Just kidding. I make them talk to the hand. I do not want their schkeevy-gloved hand on my CysticBack. Do I really look like I need help coughing? Unless it's Respie or CysticMommy, Get the fuck back.

Every 4 hours a random woman will take my vital signs. Here are the things that are true about this woman, even though she is always a different woman: She does not speak English. She either yells when she talks or refuses to speak. She wears white tights. Her job is to take my pulse, my temperature, and my oxygen saturation, and to write down the oxygen amount I am using. Here is what is true of her a good 50% of the time. She does not know what any part of "that is too tight" or "I can hold the thermometer, you're stabbing under my tongue" means. She opens the door to my room 3 times for every 1 time she comes in, staring at me. She does not, in fact, know how to do two things: take blood pressure, or read an oxygen meter thingie on the wall (the amount of oxygen I'm using). This may sound silly, but when someone is wrapping a blood pressure cuff around you and not pumping it up, what draws them to the conclusion "100/70"? which btw, is NOT MY BLOOD PRESSURE. She is not taking my blood pressure, she is often faking my blood pressure. I digress. The worst, sckievest part: while this woman fakes my blood pressure, she always places my hand on the side of her hip, so that the hand of the arm she is faking my blood pressure on, is caught, trapped, captured between her pudgy hip and her elbow, while she uses the rest of my arm and her arm to fake my blood pressure. The process Schkeevs me for unexplained, CysticGalComplainer reasons. Schkeev!

Three weeks in this place. My good mood is fading.
Love, CG

Back In the Saddle Again

Back in the hospital again I offer you the best sort of post that there is to post which is of course the post of
stream
of
consciousness
post post post postable
I am back in the hospital after a weekend of feeling very short of breath
very short of breath indeed more short of breath than I ever have felt
in my whole life long
over and over again
on the couch short of breath collapsing
on the bed short of breath laying
on the kitchen floor sitting down time for a rest
in the bathroom leaning over the sink just to brush the teeth I am short short short of breath which really means
I am gasping
or drowning
or both
trying to catch your breath when you have no room left to breath is just sort of
.
.
.
dot dot dot
useless as a metaphor.
you cannot catch something that doesn't exist is what I'm trying to say
how can you catch your breath
catch air out of the air
and put it into your lungs
where there is no room for it anyway
that's like trying to catch an elephant in your driveway and fit it into the trunk of your car
the trunk of an elephant's trunk wouldn't fit in your trunk.
not with all that junk.

i'll leave you with that bizarre thought for tonight.

i am in the hospital again but there is no need to worry. i just needed more oxygen, and it seems, some hydration, and of course, some IV antibiotics, and but of course,
a nap.

i miss my cats.

goodnight.

look forward to the first post by CLady, perhaps tonight!!

Picture of the Day

First day home from the hospital. Full report:

I accomplished all of my hospital related tasks. Only exception: I did pulmozyme once and hypertonic saline once. Did not do either of them twice. Figured, first day home after hemoptysis. Takin' it easy.

I worked out for 20 minutes and it went well. I wore my oxygen all day and the only time I left the house was to go to CVS (ahh!) and to go the vet to get antibiotics (ironically) for S-Purry^.

Wanessa (ahh) comes tomorrow. Last week, she must have thrown out my Yuckie cup. So today, I had to make a new one. My yuckie cup is where I put the yuckies. I like it better than little diseased dixie cups in my house or in my garbage cans. I put my yuckies in it, and then I rinse em down the toilet, then I squirt some sort of yuckie-killing household cleaner (whichever one is around) in there, and rinse. I take pleasure in writing YUCK!! all over my Yuckie cup so that I know never to drink from it, and that it is okay to clean it with household cleaners. Neither yuckie, nor bleach residue, should ever go IN. They only STAY OUT!!

Goodnight!
CG

A Poem From The Hospital

OxycoPoetry

Began the day with brushing teeth
Like other days, lungs gave me grief.
"Port placement will be first thing," they say.
I change my shirt, and I'm on my way.

Then pulse climbs high, O2 drops low.
The sweat starts seepin out.
Time for freaking-out-relief.
My lower lip begins to pout.

No valium says the nice P.A.
It will mess up your sedation.
Oh me, Oh my, "I'm freakin' NOW-
"Don't you see the situation!?"

Dr. U-Bird^ and his friend N-pregg^
came to have a calming chat.
Then ativan helped us all out
I was calm, and that was that.

In the scary surgery room,
I fell fast asleep and don't recall
They made some cuts and balloons and such
That is my memory, none at all.

I slept it off, my head did hurt.
My chest felt sort of odd.
I wake up later, groggy at first
Not too much to check my bod.

My port placement looks so super nice.
My boobs, I checked 'em double twice.
Not too high and not too low.
Sex'll be great and it still won't show. *in clothes

The day goes on and then it ends
Not yet going with the flow
I try to rest but feel awake
Despite the Oxycodo.

Love, CG

CG issues a public apology to male readers

I'm sorry for talking about my boobs so much. One more week, gentlemen. Hang in there.

Ok. I'm in the hospital and I'm getting my port in tomorrow. Thus, I'm going to read as much as I can about it tonight so I'm feeling super prepared. UNLESS, I start to feel more anxious. Then, I will stop reading.

More later.

Please follow me on twitter for live hospital-tastic updates!!