Cystic Gal

Remember how I started writing this blog, "as a tool to manage my anxiety?" Well, of late with some of my bloggies getting their Big Call to transplant, I have been thinking about some things that I have been anxious about regarding transplant for about . . . 19 years. Here goes! Ten Things I Don't Want During My Transplant Journey 1. Pictures takes of me in the ICU, wearing a hospital gown, in various states of mental/physical awareness, or to otherwise prove that I am alive via the internet . Some people are totally comfortable with this, and I think that's really cool. I was thankful to view CF Steph's transplant pictures as they were posted, to better inform my future. However, I am a more private person when it comes to how I look while I'm sick. You all know I'm an open book about my personal feelings, but pictures of me, that's another thing. Think about a so-called normal person the day after a heart attack or stroke, sitting in the ICU, b

See THIS article : It basically shows that in a long-term study of lung transplant patients at a single center, patients who received lungs from donors after cardiac death (versus brain death) had virtually the same survival rates, and only marginal differences in other complications. What does this mean? Well, I'm not sure. Perhaps, surgeons and tx centers will be ably to prioritize the procurement of lungs in the donation procurement surgeries? Hmm. Maybe not, because I think the lungs and heart are the last to be procured. I am not sure.... but I can't see any way that it's not good news for lung patients that the outcomes are good with donors who passed from cardiac death. Piper explains a little bit in the comments below. Perhaps some other readers will comment as well. Some people read these posts and wonder, how can I so casually talk about where the lungs come from and different types of death? I have come to terms with the idea that no matter whether a person do

For those CGUnBlog subscribers, there is a post there titled, "I'm Ready," for later release here. Thanks!

Piper Beatty , James fahr, Justine and I want this to be this night for our transplants. Last time Piper and I made a pact for our transplant, Jess got the call- so it can work! Tonight tonight tonight! Say your prayers, cross your fingers, don't step on a crack- whatever you need to do to get Piper, James, Justine and I our lungs!!! I repacked my bag, and it's on!! Let's try to get 'er done! *just to be clear, I didn't get the call, I just am trying for one of us three to get it- and maybe all three! love, cg

Earlier on this blog, I referred you to read Eva's blog. We lost Eva to post-transplant chronic infection in March. Today, she made international news on CNN . Take a look. Love, Love, Love to you, Eva. cg

This blog is by a young man named Mark who got his transplant in March at Cleveland! I look forward to all this stuff after my transplant- yes, even cooking dinner without cranking the juice up to 3L and possibly setting myself on fire!! Also, you can read this article about him in the Boston Globe. Congrats, Mark!

Dude! I broke 1,000 page loads per day on Thursday!!! AWESOME. Thanks for readin', readers!! Mon Tues Wed Thur Fri Sat Sun Total Avg Pageloads 199 261 323 1,449 385 308 321 3,246 464 Unique Visitors 155 156 222 457 230 199 229 1,648 235 First Time Visitors 63 80 138 339 106 87 109 922 132 Returning Visitors 92 76 84 118 124 112 120 726 104

Earlier this week, I was challenged by a fellow Fibro to compare our Cystic Adventures. The below is our result. Ever think the CG blog is too girly?! I didn't think so! But you be the judge. Read on . . . CF BLOG THROWDOWN: B OYS VERSUS GIRLS Are you ready for the CF Rumble in the Jungle? In the pink corner , we have CysticGal, sensitive and kind, who adores pictures of bunnies and anything pink. She is loving, caring and the perfect model of CF womanhood – A poet of the highest order. And, fan of fuzzy animals and all things “chic.” In the blue corner : me. I don’t take showers in the hospital; I smell of man musk most days. Raw, nasty and gross and 110 percent CF man. Defective chromosome and mucus-filled lungs ready to roll in my “Smokey and the Bandit” black Trans-Am. Bring it on, "UnKnownCystic." Respect for showing up. TEN QUESTIONS: Boys vs. Girls 1. What is your favorite thing to spit your sputum in? CysticGal : I'd prefer you call it "yucky.&qu

Tiffany Christensen, Photo available at Sick Girl Speaks Blog, link below! Do you like my blog? Well, there is another blog and a few books you might like over at Sick Girl Speaks!

Unfortunately, I could not make this pic small enough to hide my hideous single wrinkle. Pre -Transplant Never Looked So Good! Top Ten Things I Wanna Do After Transplant : 10. Sleep without a bipap or oxygen on my face. 9. Go for a walk outside without carrying or pulling oxygen. 8. Workout at a gym and show off my fit bod. 7. Go swimming (yes, I know, I have to wait like a year for this.) 6. Go on a vacation and sit on a beach (with suntan lotion, ok ! jeez! my new post- tx subconscious is really draggin ' this list down) 5. Direct a musical and run around like a crazy person when I want to instead of asking my assistant, "Can you go...[insert cardiovascular activity here]," although the kids at WHS and BH would tell you, I can dance with O2 with the best of them. 4. Only take naps when I feel like it. 3. Do yoga without risking life by tripping on oxygen chord again and again, and again. 2. Talk on the phone for a really long time, or talk in general for a really lo

Cystic Gal officially issues the following notice to readers regarding her earlier post, "Cleveland Clinic Rocked," to further clarify her statement and stance that the place was indeed, rock-tastic. Initial statement, and clarification, below. Thanks! "8. Doctor in charge of my care gave me a hug and agreed that I am not in a "tender time of my life," as recent events have dictated. (She was like, "It's not a tender time, you're dying!" and I was actually relieved at her candor. I will write more on this issue in later posts.)"* *NOTES, but not apologies: When the doc said this, in the context of the conversation, it was both appropriate and a relief. I mean, we had already looked at my horrazzizable CT, discussed my case (lungs=bad! body=good! transplant=hope for soon!) and really, anyone active on the list is indeed on there because it is believed they would not survive otherwise. The reason her comment was a relief was that I received

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 (se

I have been meaning to post this since I got back from Cleveland Clinic for my 2nd lung transplant eval. It was awesome. Awesome Awesome Awesome. Here are the top ten reasons it was awesome: 1. Now I'm on two lists so I'm virtually guaranteed to get a transplant. 2. The doctors there were all, across the board, smart, direct and kind. 3. I now know my LAS score, which my other center refuses to discuss with me, telling me it is a UNOS policy, when in fact it is their policy. I am very comfortable with my score. 4. They have 4 tx surgeons and 5 procurement teams. 5. They do a surgery more than every other day. ( I can't quite say daily.) 6. Their patient services were phenomenal. Walking in, they give you an oxygen tank, check your machine or tanks like its a coat check, give you wheelchair if needed, help you find your way. They call if they can bump up your appointments. Wait times were minimal. Never did I receive a, "you're ten minutes late" grumpy attitu

So, no, I didn't get my lungs yet and no, nothing's wrong. I just sorta haven't felt much like writing lately. But, I will tomorrow. I've been writing some poems over at Patient Press, and also, was working on getting its LLC status, which finished today. Oh yeah, and I did my taxes which were super. Super like taxes. Next post, I promise, I will write about how much I loved Cleveland Clinic and how much I look forward to getting my transplant there, or uh, here. cg

Samuel (c) MEP, April 2010 He liked to hold hands, sing loud, drink much. He hated invasions of privacy. He disliked loud laughs, large cars, long baths. Extravagance, he thought, was over-rated. He preferred the cool breeze, a good nap, a true friend. He loved to watch snow falling slowly. He was usually polite, unless screaming, or crying. He readily shared his opinions. He wants you to know that he thinks this is silly. It is ridiculous, he believes, to make a poem of him. It is ridiculous, he believes, to write an animal poem. I tell him this poem is not him at all, how ridiculous, how absurd, I tell him. I tell him this poem is a poem about a woman writing a poem about a woman writing a poem about her cat. He is easily pleased, sleeps deeply, wakes calmly, young and spirited again.

Over on patient press, I am doing a poem a day. Since I am attending to my still-ill cat and being asked to consider putting him down, I am writing some sad poetry. Do not be alarmed. Much of it is about my poor cat. http://patientpress.blogspot.com

Please take a moment to read this wonderful article about our bloggy Eva. "Love, Love, Love" CG CLICK HERE: Eva gave all her love away

My poor dear kitty Samuel is still sickuel. I will call the doctor tomorrow and see what she thinks is appropriate. I got him to eat a little bit of Friskies today, which I've been told is the "McDonald's" of cat food. I spent much of this afternoon with my friend Lucy. We had a good time and I got to tell her all about Cleveland Clinic, which was awesome AWESOME and I also found out that bloggy friend Marc got his Boston-to-Cleveland transplant last Monday!! Congrats to Marc. I don't know any other news, but I believe he is doing well. In a strange turn of fate, bloggy Marc's family has a connection to a dear friend of mine, J-sing^. In news today, it was Easter. I was super tired today, both in the general sense and in the breathing sense. I only took an hour and a half of my bipap, and was unable to fall asleep. So this, I blame, as the culprit. I also exchanged spirited emails with my friend K-poet and hope to be k-quoted in her new news columnular. okay.

Samuel and Beckett, takin' their nap, about 2006. Sorry for the radio silence in the last few days. I had a won-won-wonderful time in Cleveland and was so ouber -impressed with Cleveland Clinic that I must save that post for an earlier night and a sunnier outlook. When I got home, I learned that my dear friend and frequent CG commentator, H-Mama's, dear dog Darby died. We all know the terrible loss that comes from losing your companion pet. Darby was with Heather through most of her adult life, and I think saw her through to her new role as a mother. We are all thankful to have known Darby. Then, as many of you know, Piper received another call for transplant, was prepped and sedated, intubated and vented, and then the surgery did not proceed because the donor heart and lungs did not survive the organ procurement process. I cannot compare how I feel to how Piper and her family must feel, but I have been quite sad and worried since hearing this news, though I know logically th