Day 2

An echocardiogram, a CT with both the drinking and the IV contrast, 30 vials of blood, a "bubble test" on my heart, and a 2.5 hour nap later, I'm doin' pretty good.

More tomorrow.

Yo Yo From O-Hi-O

At Cleveland Clinic Guesthouse safely! Continental Airlines- not a problem with my o2! Actually very helpful!! All went well and restin' up for doctor day 1 tomorrow. Goodnight!!

Help Pass ClinicalTrials Bill for CF

.

Dear Advocate: In the last few weeks, there have been several important developments both in health care legislation and in CF Advocacy. See what’s new and learn how you can get in on the action! Legislative Update New Health Reform Bill Includes Provisions that Impact People with CF On Tuesday, March 23rd, President Obama signed into law a health reform bill that includes provisions that impact people with cystic fibrosis (CF). While the Foundation has not taken a position on any particular health reform bill, we have strongly encouraged officials to include specific reforms that are important for the treatment of CF. Learn about provisions in the bill that benefit people with CF. Clinical Trials Bill Not Included in Health Reform -- Campaign to Pass Bill Continues The Improving Access to Clinical Trials Act of 2009, which would allow people with CF who are on public benefits to participate in important research without losing their health coverage, was not included in the health reform bill that President Obama passed earlier this week. Your efforts to get support for this bill in Congress are more critical than ever! We will pursue passage of the legislation as a stand alone bill. Help continue the momentum that has already brought an extraordinary 116 co-sponsors onto the House version of the bill: Ask my members to pass the clinical trials bill in 2010!

Grassroots Update

CF Advocates March on Washington to Advance Foundation Agenda

On Thursday, March 11th, 35 CF Advocates from across the country met with members of Congress and Congressional staff as part of the Foundation’s annual March on the Hill event. CF Advocates shared their personal stories and asked legislators to support the Foundation’s public policy agenda. As a result, 5 new Representatives in the House signed on in support of the Improving Access to Clinical Trials Act of 2009, and 2 new Representatives joined the Congressional Cystic Fibrosis Caucus, putting the new total at 150!

Did you know?

Looking for a great way to introduce your family, friends, neighbors, and coworkers to the Cystic Fibrosis Foundation? Invite them to participate in GREAT STRIDES -- the Cystic Fibrosis Foundation’s largest national fundraising event. Every dollar raised is one step closer to a cure. Find a GREAT STRIDES walk near you and Register Today

Thank you for your support!

Mary B. Dwight
Vice President for Government Affairs
Cystic Fibrosis Foundation
(800) FIGHT CF
publicpolicy@cff.org

Goin' on a Lung Hunt.

Not a lot of time on the sched. before I leave for Cleveland Clinic tomorrow to get myself on another UNOS list. I am so very excited. I made this video to show you :)

For Eva, Breathe Freely

Eva, in a beautiful artistic pose.

We lost a wonderful young cystic gal this week. Breathe freely, Eva Dien Brine Markvoort. She was a wonderful poet, student, advocate, party gal, and blogger. In her honor, I offer you one of her poems tonight:

more each day
© Eva Dien Brine Markvoort 2006-2010

hugs from ted
little step little bit
one tiny tiny moment

trying hard to pull it in
feel more myself every minute

need my sister need my brother
my father boyfriend mother

medications like mathematics
adding minus food and liquids equals nausea question mark

sleep
sleep
sleep

blurry eyes trying to keep up with conversations
no need
each hand being massaged by friends in order to feel safe and held
i am not alone

then two days later
i am brave
brave
strong
kitchen breaks

darkness fills the room
i am ok
i am ok
sleep is suddenly my friend

hope resounds
i am not dying
i am living living living more each day
i am loving more each day
loving loving loving more each day
more each day
love
love
love

What's Blog Got To Do, Got To Do With It?

H-Mama^ pointed out that there is really no excuse that the New York Times did not consult me on this article :) Alas, it's a good article anyway about the function of this thing we call "the internets" on our daily CF/Transplant/What's-A-Mattah-You, lives.

-CG

Social Networks a Lifeline for the Chronically Ill

By CLAIRE CAIN MILLER

Published: March 24, 2010

A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline.

Enlarge This Image

Peter DaSilva for The New York Times

Amy Tenderich, who has diabetes, writes a blog and manages the social network Diabetic Connect from home in Millbrae, Calif.

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.

“It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation.

“If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report.

They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.

Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems.

In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.

“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.”

Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress.

But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.

John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator.

“That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.”

When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.

Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide.

On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”

Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”

Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability.

From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms.

“There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.

Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users.

Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases.

“If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”

Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet.

Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities. For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements.

“That’s what the community can give you — a real-life perspective,” she said.

A version of this article appeared in print on March 25, 2010, on page B3 of the New York edition.

No-Go on Jess

So it's been a hard week of dry runs for the cystic gals. Piper's lungs were a-no-go, Jess' lungs were a-no-go. But CF Steph is kicking ass and taking names at the hospital where I go!!

Piper was quite eloquent in pointing out to all of us that when it is not our time, it is another person's time. Jess was quite silly in pointing out that 12 hours after being NPO, you are a ninja of hungriness and might just feel a little bit like, "No Lungs, No Peace." That is our mantra!! No matter how many times we text it, we get a giggle out of NO LUNGS, NO PEACE.

Also, "All we are saying, is give lungs a chance." That's pretty funny too.

Tomorrow is my poetry reading. I am super excited and only a wee bit nervous about it. Cookies will be served.

Today I had both doctors (cf and tx). Ugh. I don't know what continues to be so wrong with my brain. No matter how many times I go to the doctor, no matter how many times I think, "I will remain calm and polite at the doctor," it does not happen. If any little thing goes wrong (and 5 things always go wrong,) I get all panicky and sweaty and "don't touch me," and "please don't call me sweetie," and I just make the whole situation bad when it is actually just fine. I mean, I am so sick of myself about this issue. I cannot endure me at the doctor. Imagine my poor mother, the doctors and nurses, the PFT person!! I might as well wear a t-shirt that says, "I am a crazy biotch." I also get this really dark sense of humor that no one seems to enjoy but me. Ughie.

Public apology to all : I'm crazy at the doctor. I'm working on it! I'm freaking sorrrry!

Goodnight, CG

Jessica got the call!

Please visit Jess' blog at Jess' CF Journey and watch her video! She is waiting to see if the surgery is a-go, so keep her and the other families in your thoughts !

Update on CFSteph- She is doing well, off the vent, up and moving, allowed to eat and wrote, "I can't believe how fast this is going!" on her facebook!

Many Days, Much News, None of it mine!

So CFSTeph got her lungs!! After a minor bump in the road, she is doing very well and hopefully was up and walking today!! Then, Piper got the call this morning but was not sent into surgery. Her wonderful, honest telling of the tale is HERE, and I encourage you all to read it. Reminds us that when it is not our time, it is someone else's time. Something good for me to remember.

I have been busy as a bee getting read for my reading . I have been shipping out the books, and picking out the poems to read- so exciting! I would love input on which poems to read, so if you have thoughts on that, leave them as comments, or email me at cysticgal@gmail.com . Don't have your book yet? So sad for you! You can buy it HERE. Copies are going fast! I only have 1/2 of the inventory left already!! YAY!

Here is a posting from Piper's blog that I would like to share with you, have a wonderful Sunday. -CG

Saturday, March 20, 2010

Because Inquiring Minds Want to Know

Some Real Facts about CF and Transplant:

• As of March 12, 2010 (the last published data update), there are 274 CFers on the national organ transplant waiting list. 248 of these CFers are awaiting double-lung transplants. 30 are awaiting liver transplants. (Source: Organ Procurement and Transplant Network Data)*
  
• 153 of these CFers are in the 18-34 age group. Of the remaining 121 cystics-in-waiting, 72 are older than 34 and 49 are younger than 18. (Source: Organ Procurement and Transplant Network Data)*
  
• According to the CF Patient Registry, nearly 1,600 people with CF have received lung transplants since 1991. (Source: CFF. Note: I have no idea what the end-point on this data is, although I know it to be at least 2003 or later.)
• Living lobar lung transplants (where part of a lung is taken from each of two living donors and transplanted into the recipient) is still an option for some people with CF. In 2003, 17 people with CF received their miracle from living donors. That same year, 126 CFers were blessed with the gift of life from deceased donors. (Source: CFF)
• As many as 90% of people with CF are alive 1 year after their double-lung transplants. (Source: CFF. Note: I'm again unsure of the date for this statistic, aside from the fact that it is 2003 or later. The average survival rate after transplant continues to increase as newer and more effective treatment options and transplantation techniques are developed.)
• After transplant, the new lungs will never again "have CF." People with CF who receive transplants will still have CF in their pancreas, sinuses, intestines, liver, sweat glands, and reproductive tract. (Source: CFF)
• Almost everyone can be an organ donor. There is no medical condition, age, or race that automatically excludes you from all potential organ donation (even HIV positive people can donate to others with HIV, for example). All major religions in the US support organ and tissue donation. (Source: Donate Life America Fact Sheet)
• You can register to become an organ donor in your state here: Donate Life America
• People with CF living after transplant can: run half-marathons, be professional athletes who have carried the Olympic Torch, follow their dreams as an actress, raise children, get married, become "Heroes of Hope," volunteer, have careers, finish school, write a book, make a movie, learn to surf or scuba dive, live for 20 years (and counting) after their surgery, make a difference, ski down or hike up some of the tallest mountains in the country, advocate for other patients with CF or chronic illness, or...well, you name it, we do it. (And yes, I honestly know -- or know of -- people in every single one of those categories.)
  

And, the coolest fact of the day by far...

• One of my personal blogger friends with CF received her special gift of life last Wednesday night! So make that 273 people on the waiting list!

*Note: These statistics count the total number of candidates, meaning that individuals listed at multiple centers are counted only once. Also, I am including the table below due to issues with the source link for this information. All data can be found in its original form by conducting a search on the United Network for Organ Sharing website, and is compiled by the Organ Procurement and Transplant Network. The first column represents total numbers; the third column represents liver candidates; and the seventh column represents lung candidates. All other columns represent additional organs, including pancreas, kidney, heart, and intestine, as well as multi-organ transplants.

The Call: It Happens

Tonight I believe that someone at my center is getting her transplant surgery!! YAY her!! In a weirdo coincidence, I got to see some of the behind the scenes (well, okay, it was in the lobby of the hospital)... and they are going to take super care of her and she will be back on her feet in no time.

Moment of peace and prayer and deep deep breath to [the patient who I'm workin really hard not to name for her privacy!]. May she wake rested, peaceful, pain-free and breathing deep!

See, the call can happen any time, even when you least expect it, or after you've had a really bad day!

Love, CG

a new poem

this will not be included in the chap, as it is a new one.

A Lonely Only Nobody Else

© Mary ElizaBeth Peters, March 2010

you can be hiding in the bathroom, three feet and one door blocking

and you can be alone

you can be laying by your lover, midnight and your blood spilling

and you can be alone

you can be singing in a choir, sunday and voices raising

and you can be alone

everyone knows you can surround yourself with people

and you are still alone

everyone knows she can keen-or-cry for you

and you are still alone

everyone knows he can whisper-sigh to you

and you are still alone

people think that when you’re dying

that your are not alone

people say it when you’re crying

that you are not alone

people don’t believe that they are lying

that you are not alone

but you are

but you are

but you are

and so and so and so

and so what of it

of it and all before it

if you are reading this poem you should know

that you are not alone

and you are still alone

and you can be alone

only if you alone

can leave me

alone.

I'm On the Breathe Team, Baby

This post is for Jess, who sent me this shirt, that I can't wait to wear on the night she gets her lungs!!! Jess is one of my bloggies, obviously, and I am so thankful to be on her team, as she is on mine!!


My week in links:

Busy week ahead: home nurse to change my port needle- oww!; pick up books from printer and mail 'em like a crazy--yay!; cf clinic appointment-um, ok; transplant clinic appointment- time to get serious about my place on the list, mf's; psych appointment to make sure I'm still sane-will keep you posted; super secret other meeting- will remain secret; and my ten minute play being presented by the f.u.d.g.e theatre while my friend K-teachie is in town.

Phew. Tired from just typin that! Better go to bed.

Love, CG.

Best. Nurse. Ever

Meet S-Crushie, my favorite nurse of all time. Why do I name her S-Crushie^ using the Super Secret Cystic Gal Pseudonym Creation Calculation? I must not reveal my secrets!! I will tell you that the Crushie part of her "name" actually breaks the rules of the sacred, secret calculation because it is actually based on how I feel about S-Crushie! I have a total non-sexual crush on this gal! I have the 2nd biggest nurse-crush ever on her, in fact!

She is very funny, very nice, loves good candy and good coffee, never wakes me up from naps, and even puts up with me when I am in a cranky mood. Of course I must have a crush on her! You must too!

Welcome, S-Crushie! The first nurse to be featured here on CG! I hope that all of you have a S-Crushie in your hospital!

goodnight (from home!!)
cg

Mask Up to Meet Up

I had the most fabulous time meeting my fellow cystic gal Amy here at my hospital! We decided to call this meeting Mask Up to Meet Up- Here are our cute pics!!

Amy and me!

Amy! She is smiling under that mask!

Me! Also smiling!

Some of you might be wondering, why are you wearing masks? Amy and I both have cf, of course, so we want to take precautions not to spread germs from one another. Particularly, since I am sick and in the hospital, and she is not. So, we sat on opposite sides of my room, and we wore masks. It was a lot of fun! We talked and talked, and we both remarked how tiny and cute we both are.

I can't wait to meet Piper next. Did I mention that Piper was super jealous of these meeting? I wanted to make sure to mention that. ;)

Other news- no bleeding today! But also, no chest PT or exercise other than going to the gift shop, where I bought new salt n pepper shakers, which I needed after a freak pepper cementing incident. The shakers are shaped like those honey bears that you squeeze honey out of. Super! And cheap.

Oh yeah, and if I didn't mention it, I am currently selling my poetry chap, which will be beautiful! Visit Patient Press to buy your copy!

Goodnight!
CG

It's Finally Here! You can buy the book!

The book will be released this week! You may now pay for your orders via PayPal. If you did not pre-order a book, you may still purchase the book while it's in stock!


Interested in a bulk order?
Stocking your book store?
Please email patientpress@gmail.com for details on bulk and retailer purchases.


PayPal is the secure way to pay online. You do not need a PayPal account to use PayPal, you can pay through it with any bank account, credit card, or debit card. You financial information is kept secure.

News and Mask Up to Meet Up

This is a quote from the Conan O'Brien farewell speech, and it is a pretty good motto. T-shirts, anyone? This is my motto for the hospital too. I have a lot to do while I'm in here - like finalizing my proof the book, accept purchases of the book, promo the book, start a second book... (you get the picture...am I overly excited?)

Also, have to coordinate travel to [second tx center]. Had a great chat with tx center PA here, one I love, I'll call her.... C-Meddie, for the town she is from and her job. C-Meddie said it's great to be on two lists and play the odds against each other. See who comes through first, make no commitments, like having two boyfriends. I said, C-Meddie, you know me so well!

The other big project while I'm in here: get better! Still having some streaking, so I'm not out of the woods, or out of the jail, yet.

Tomorrow! ! ! Famous blogger Amy is coming to meet me. She is going to start seeing my team here at [I'll let her blog tell you], and I am so excited. After her appointment she is going to come visit me and check out her future digs at this hospital! This will be the first ever Mask Up To Meet Up event in my life. I have this idea of making this a big event down the road, like ordering crazy cute masks and having a big picnic or something. Super. Not a project for now, I know. Too many projects already. And all done while sitting! :)

More later... cg

Still in Jail

But worked on my book all day except for when my Muzz came to visit, I talked on the phone with my friend Lucy^, saw T-Money^, and JO came over to watch the Oscars!!

Here is the new cover of my book! I am so psyched!!

Health update: no bleeding yesterday, but then it came back today right before I was going to take a walk outside in the super weather. I was afraid to aggravate my angry lungs, so I did not go. Hopefully, tomorrow, I'm all clotted off or whatever and can have a normal day- maybe go home Tuesday!!

That's all, homies!!

Here is What I Know

Being in the hospital on a Friday is usually craptacular.

Waiting for your bipap to be set up when you've been awake most of the night and since about 6 is even worse.

I am cranky.

I am sleepy.

I don't think I'm allowed to sleep without my bipap.

My lungs were bleeding yesterday and today, so I'm back in the hospital.

Don't be alarmed. I'll call you later (note to the homies).

Also, all apologies if this offends, but as the picture above shows, in my 12 years as an official adult with CF, I have yet to experience a CF Adult Clinic nutritionist who contributes a single new idea or dare-i-say conversational phrase to the process that is my hot bod. ;)

Goodnight.

Patient Access Network Foundation

Here is a really great resource for those cg's out there (or cboys or transplant patients in general, or actually a whole list of chronic expensive diseases)-that are having trouble paying for medications, whether due to lack of health insurance, high copays or co-insurance, or medications being denied by insurance as experimental or non-generic.

The Patient Access Network Foundation

They grant temporary benefits, in some cases, while verifying your financial resources- so this is a great resource to go to for short-term /emergency aid while other agencies might be stalling you. They have coverage for CF, transplant, diabetes, and a whole list of covered diseases.

(I have no professional or medical relationship with them, btw, just putting some info out there!)

L'Chaim!
CG

Awesome Day Today

Today I went to Red Spot Printing and though the fumes of the old printin' press were a little hard to muster before we moved into the glass office, I had a rad time picking out the pretty papers and binding and doodley dads for me book!

Then, I took my car to the awesome Tom Lyons Tires (and other automotive razzmatazz), because oh nos! I thought somethin' was wrong-o with my car-o. It was making a clunketty clunk noise when switching gears yesterday. Nothin' wrong-o, says Mr. Tom-o. (err... they looked, and saw nothing, drove it around, and say, it's okay now!)- best part: No charge. Thanks Tom Lyons!!

Then I came home and received a crazy sleep outfit from my sister which I did uploadeodoe.

Then I emailed my ars off with an author named Patrick Randolph about a book called EMPTY SHOES. This Patrick and I wanna have our poetry reading together. His book- about homelessness. Me book (and why am I Irish today), about waiting on The List- what do they have in common?

Navigating complex social systems while enduring the most challenging emotional experience of your life. Should make for a great night! Err... at least a lot to think about!!

Super. Gotta go write a poem about...oh dang, I'm not gonna tell you.