Friday, April 30, 2010

Ten Things I Don't Want During My Transplant Journey

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, barely aware. People don't expect s/he to pose for a snap to memorialize it as a great moment, do they? My best tx moments will come a few weeks after the surgery. Not when my hair is greasy, I'm in pain, and I'm high as a kite with no underwear on. (As a general rule, I recommend refraining from taking pictures when people don't have underwear on. I have never had a reason to articulate this guideline before, and yet, I feel now, these will be words to live by.) I digress: Hear ye, hear ye, no one has permission to take my picture after the transplant until I am well-enough to take my own damn picture, which we all know I am a huge fan of.

2. Dramatic conversations while I am in an altered mental state due to illness or prescribed medication. People have an impulse to tell you personal things when you are in a compromised state, because they are worried about you and have the idea that they have to, "get it all out," right then and there. While I understand this human instinct, it can create an unduly emotionally stressful environment. One challenge many transplant patients face is that when they are in the middle of the most stressful life event they've ever managed, they are expected to manage the experience of those around them. Perhaps the joke's on me- but I can't do it. If you want to tell me something personal, I am available via email, phone and text right now. Don't save it 'til I'm trying to meditate, breathe and talk to Jesus. A simple, "I love you," will suffice in these situations. No need to apologize for being mean to me in third grade, or for breaking up with me in college.

3. Coaching. This isn't football, I don't want anyone telling me to "tough it out," "toughen up," etc. Unless you're in the bed next to me and your chest has staples in it too, I don't want to hear any cheer leading. After transplant, I will have moment of euphoria, fear, gratitude, and pain. I will need to support and acceptance in each of these phases.

4. Touching. Other than the infection control protocol that is set out after transplant, everyone should please know that I'm already sort of a "don't ask, don't touch," type of person when I'm in any state other than totally healthy. If I want a hug or a hand-hold, or even a cuddle, I just go ahead and ask or initiate. One of my biggest anxieties in the medical environment is the nearly constant, very personal, touching. It takes all my strength not to backhand the people who are paid six figures to do so, so only imagine how I feel about the bourgeois.

5. Comparisons. Transplant has come a long way, baby. Every center has its own protocol and every patient is different. I already know that I am an unusual patient (insert mean jokes here). I don't want to hear about how this person or that person was on the vent for how long, how that patient was up and walking by x o'clock, or how s/he walked so far! I will be doing the best I can based on my team's recommendations, and I don't want to hear it if you secretly think, "oh boy oh boy, I was hoping she would be ready to run the marathon by Sunday!"

6. New old friendships a-croppin' up. Ok. If we're not in touch now, like you don't know my phone number or real address, don't write me a weird email about how we're so close. I've heard that a lot of people work out their own issues with health/mortality when literally anyone they know gets sick. Send me a get-well card, but don't try to get up in my face.

7. Memorializing / Infantalizing Me. Whoa, d'ems some big words d'ere, cg! It really bugs me out that during illness, people revert back to treating patients like they are children, posting childhood photos, calling them by nicknames of yesteryore-- did I just make up that word? I'm not cool with that. I'm almost 30. You can call me Cystic Gal, not Cystic Gal"ie" or "My little Cystic Gal-aroo" or whatevs. (exceptions to immediate family only and you know who you are). Also, building virtual memorials to the person. I'm gonna live, dudes! I have no fear of another outcome. Save the yellow-tinged 80s photos for a way future date.

8. People reading too much into my writing. I'm required to see a shrink as part of the pre-tx process, most centers require it. Let him/her do all the analytical razzamattazz. This is a unique time in my life to observe and experience life in a way I never have, and some never do. I have found it to be a highly creative time. Back when I was an English teacher, I taught several lessons about the difference between the "speaker" of a poem, and the author. I am not always the "speaker" in my creative work.

9. People asking questions that would be inappropriate in other environments. So, like, unless you're licensed by the state of X or X to ask me about poop, pee, and other interpersonal topics that I won't even list here, totally do not ask me about these things. Yuckos. What's worse, I might answer. Double yuckos.

10. People worrying about me.
Woah, that one is easier typed than done, I know. But I have great faith that the surgery will go well, my recovery will go as expected, and I will be back on my tiny little feet in no time.

Thanks for all of your support! I know these requests might surprise some of you, but I ask you to be understanding and know that following this list will create much less anxiety for me!


Wednesday, April 28, 2010

Good News for the Donor Pool: Donate Life

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 donates their organs or not, they die. It's sad, but it's also true:

"Don't take your organs to heaven, heaven knows we need them here."

Tuesday, April 27, 2010

CGUnBlog Post is Up

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

Piper, James, JUSTINE and I ask the fates for TONIGHT: Transplant QUADRUPLICATE?

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

Eva Makes International News, Again, on CNN

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.


Monday, April 26, 2010

Another Blog I Lke

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!

Saturday, April 24, 2010

Holy StatCounter Record, Batman!

Dude! I broke 1,000 page loads per day on Thursday!!! AWESOME.
Thanks for readin', readers!!

Unique Visitors1551562224572301992291,648235
First Time Visitors638013833910687109922132
Returning Visitors927684118124112120726104

Friday, April 23, 2010

CG Smackdown: Boys versus Girls

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 . . .


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." I spit the yucky in a pretty blue cup.
UnknownCystic: An Old Milwaukee beer can so I can shoot it off a fence post later.

2. Things you'd like to say to your nimrod RT:
UnknownCystic: Is that my inert pulmozyme in your body-temperature-heated pants pocket? Or, are you just happy to see me?
CysticGal: If you hit my boob again, we're done.

3 What do you think about when you're at the gym:
CysticGal: That's right, I'm naturally thin and walk this slow on the treadmill. Suck it. And stop staring at me.
UnknownCystic: I don't like cadio or being a thin guy. No matter how many weights I lift, I won't look muscular. Where's the radioactive spider that turns me into Spiderman?

4.What excuse do you give to avoid taking the stairs?
UnknownCystic: Sorry, my knee is acting up again. Old bear-hunting injury. But we ate like kings that night. We ate like kings!
CysticGal: These heels are killing me! I'll meet you up there. (Said while wandering off toward the elevator.)

5. What is your biggest worry about your body?
CysticGal: That others will be jealous of my supermodel thin bod. Poor ladies!
UnknownCystic: I worry about the inside of my body. Don't want to be coughing up blood when I'm hanging with supermodels, do I? BTW, the bag over my head helps in those situations.

6. What is your most attractive CF-related quality?
CysticGal: My raspy voice gives me that Demi-Moore-esque quality... or is it that I'm sleeping with Ashton Kusher?
UnknownCystic: I have no attractive qualities, hence the bag over my head. CysticGal, digging your choice of Demi. I'll call you late one night for a . . . talk. You can call me . . . Ash, baby, Ash.

7. What would you change about your CF Clinic?
CysticGal: I'm not saying that it's okay to use prescription drugs for the wrong reasons, but I am saying I'd like to be high the whole time. I think its best for all involved.
UnknownCystic: My clinic experience will be similar to eating at Hooters. I want hot wings and ESPN in every exam room. The nurses, well, you get the idea. Oh, and can you tell the "high" woman in room 7 to pipe down.

8. What line of poetry best describes living with CF?
CysticGal: "A good day ain't got no rain, and a bad day is when I lie in the bed and I think of the things I might have been." I don't expect UC below to understand that. So I'll offer him this: "Genetics: It'll screw you every time." That is not poetry but just a phrase I like to incorporate into all of my explanations of CF.
UnknownCystic: This is a chick question. I read "Hunting Dog Monthly." But here's one from my hardhat to impress. And it's from a woman, Sylvia Plath. "Her blacks crackle and drag." I think that's what she wrote, but I'm a dude and too lazy to look it up.

9. Who would you be if you didn't have CF?
CysticGal: Clearly, Angelina Jolie. Without all the adulterous and bizarro family stuff. Just the kids and the famous actress and Brad-Pitt-as-husband parts. Oh yeah, and she's dead sexy- like me. I'm sure if you asked Angelina Jolie who she would be if she had CF, she'd say, "Cystic Gal."
UnknownCystic: That's funny, CysticGal, because I'd be Brad Pitt. Actually, I don't like Angelina's tattoos. I'd be Brad Pitt but with my wonderful wife and daughter. Sorry, love is love and hard to find.
CysticGal: Awwww, that's sweet. And lame! Just kidding.

10. What career would you have if you didn't have CF?
CysticGal: If CF exists, I would be a child-life specialist at a hospital. I think that job is the best but I can't really do it because of all the infection control issues. If CF doesn't exist, I would be . . . ME but with lungs that worked. I think I've done a pretty good job along with having CF. And maybe I'd be fat, which I wouldn't like, but, you know. Win some, lose some.
UnknownCystic: If CF exists, a scientist to help cure it. If CF doesn't exist, a Chippendale's dancer to help cure something else. Does anyone have change for a dollar?

Thursday, April 22, 2010

Reintroducing a Shout-Out to "Sick Girl Speaks" TIffany Christensen's Blog

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!

Tuesday, April 20, 2010

Top Ten Things I Wanna Do After Transplant....and then some

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 long time, without getting out of breath. I might say that my favorite thing to do is talk. As a theatre artist, I was blessed to develop my projection (loud ass voice with little effort and a crazy strong diaphragm.) As a CF patient, I haven't every really been able to STOP talking using so much breath. These things are not in agreement with each other and I am always using up all my air being too loud!

1. It's a secret!

EXTRA: Go to NY, see Evie^, and navigate streets and subway without nearly collapsing. NYC loves the not-moving escalators in the four-stories-underground subways. YIKES!

Sunday, April 18, 2010

Clarification on Cleveland Rocks Statment #8- it was a positive! a reason to rock!!

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 a recent correspondence that was "so very sorry for me" at this "very tender time in [my] life," which I thought was disgusting in context of its greater message (that I will not disclose) because I don't think of being pre-tx as a tender time. I think of it as a fight to live. I'm fighting for my life here, and giving up a lot, gaining a lot in the process. It is a biting, kicking, scratching (then sleeping) time of my life, but it is not "tender," like a piece of meat, or a baby bunny. Though, I would make a really cute baby bunny. ;)

Feel free to email me if you want to know more ;)

Saturday, April 17, 2010

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: for Patient Press, and 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.

Friday, April 16, 2010

Back in the Saddle Again, Again, Again

Double Posted Poem

Wednesday, April 14, 2010

Cleveland Clinic Rocked

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 attitude. Labs and Xray places all over- you go to whatever one you walk by and they're ready for ya. Everyone in a good mood. Everyone nice. No kidding! So very impressed.

7. Nifty shuttles help you get around.

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, discusses my case, 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 a recent correspondence that was "so very sorry for me" at this "very tender time in [my] life," which I thought was disgusting in context of its greater message because I don't think of being pre-tx as being a tender time. I think of it as a fight to live. I'm fighting for my life here, and giving up a lot, gaining a lot in the process. It is a biting, kicking, scratching (then sleeping) time of my life, but it is not "tender," like a piece of meat, or a baby bunny. Though, I would make a really cute baby bunny. ;)

9. We found a nifty Residence Inn where we plan to stay post-tx. This makes me ever the tx twin with Jessica Newport.

10. Generally renewed my faith in transplant process. Priceless.

Sunday, April 11, 2010

No News and No Posts

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.


Wednesday, April 7, 2010

Goodbye to my dear cat, 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

poem a day

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.

Monday, April 5, 2010

Eva gave all her love away

Please take a moment to read this wonderful article about our bloggy Eva.

"Love, Love, Love"

CLICK HERE: Eva gave all her love away

Sunday, April 4, 2010

Today, a new day? Well, sorta

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. now that i made up two words, to bed.

I am home and Bad Things In Threes

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 that what happened to Piper is extremely rare. Please send prayers, thoughts, vibes and whatever you've got to Piper and her family, and to the angels above to make their delivery.

Third thing, my dear cat Samuel is very sick. I came home from Cleveland, and he has lost some weight. Then last night he had an accident and just sat there. So sad. He was not really eating, either. My Samuel has been skinny the past couple of years since he had two very bad bladder infections. But now he is only 4.5 lbs. Not liking my prior vet, I took him to a new animal hospital today, and I learn that this vet believes my Samuel is not the 6 or 7 year old cat I thought, but she thinks he is 15! She thinks he is a very old cat, which explains some of his health problems over the last couple of years, but still, this is a weird shock to me, and I am hoping he recovers. She sent him home with me, after giving him an antibiotic shot, some fluids, and an ex-ray. She said that if he does not improve, we can do further testing, but he may just be old. Isn't that odd? Looking back, when I adopted Samuel, the woman just wanted to get rid of him. He may have already been like 12 then! Isn't that NUTS!? Of course, I love him just as much! But, this whole time I was worrying about my Beckett cat growing old, and now it is Samuel. So sad. Please say pet prayers for Samuel, too.

In the words of Patty Hughes (DAMAGES), "I've had one hell of a month and somebody's gonna pay." Not sure what that means, but it gave me and my Mom a huge laugh tonight when she said it. How about this, "I've had one hell of a month, so something's bound to improve!"