Re: A CF question from another CFer

Little known fact regarding CG: I get a lot of emails. I love it! Keep 'em coming. One writer gave me permission to publish her email and my response, so here goes!

(PS Thanks JK for helping me blind it real good!)

Hi [new internet cf tx buddy!], and nice to hear you. First, let me say that I am sorry to hear that you have been listed for transplant, though it may be the beginning of a new life for you- so on the other hand, congratulations!

Where are you thinking of listing - which hospital?

I had my surgery on 7/27/10, so six months ago tomorrow!  My evaluation was a little different than most because I started the proess with an appointment and basic testing, pulmonary function tests and blood test, etc., and then I became quite ill and the rest of my eval. was pushed along more quickly. Most centers require a lot of blood tests (I had 19 viles at Cleveland Clinic), chest xray, chest CT, bone density scan, up-to-date dental and gyn records for the ladies, and an assessment of your stomach acid issues in different ways. There are probably some other tests that I am not thinking of, but those are the basics, physically speaking. There is a moderate psych exam to evaluate privately if you really want a transplant and if you are a good candidate - for whatever that means. 

Do you have a port yet? If you do, the needle poking will be less, with the exception of blood gases that DO hurt but it is true, you get used to it. If you don't already, I would recommend starting yoga or a meditation/breathing program. It saved my brain a lot of trauma during my tx process.

What are your other questions? I hope you don't mind, I'm taking off your name and posting them to my blog too! 

xo, 

On Wed, Jan 26, 2011 at 10:12 AM,

Hi,

My name is [NAME] and I also have CF. About a month ago, I was told that I also need a lung transplant. Yesterday was my last day at clinic at my current doctors and a nurse gave me your blog to read. I've been wanting to talk to someone who's had the surgery done so I know what to expect.

Well, I can't really find WHEN you had the surgery done (maybe you didn't talk about everything that went on) because there's so much there. (that I'll definitely read when I have more time)
LoL

I was just wondering if you would mind answering a few questions I have.

Well, I haven't had the evaluation done yet and so I guess I'll there.

What all did the evaluation entail for you? I know there's a bit of needle poking and I'm a baby when it comes to that. (you'd think we'd be use to it. LoL)

Hope you're doing well.

Your CF friend,
-[MY NEW FRIEND] 

--

Early thoughts on infection and rejection

. . . and my new less-crazy lifestyle for awhile.

Well, my lifestyle has been pretty non-crazy for a year, but ... whatever. This post is part PSA, part blather blather blather. I am preparing to leave the hospital (!!) and realize that I have never taken the time on the site to write about the two big words in transplant medicine:

infection and rejection.

After one gets a new set of airbags, they have to suppress their immune system severely to encourage their own body to accept an organ from another body, regardless of he matches in blood, tissue, and immunology. So, right now, I am the MOST immuno-suppresssed as I will likely ever be (other than, say, the first week after the surgery).

At the same time, the body is vulnerable to all sorts of infections from the outside world due to the surgery, from the donor and her/his immunology (disease) history, and the stressors of recovering, in my case, from a 30 year pnuemonia. In fact, my body harbors all the infections that used to live in my old lungs, so we have to make sure my new lungs do not get any sort of infection.

The result is that I take a carefully calculated chemistry of immuno-suppresant drugs, while taking anti-infective drugs like antibiotics, anti-virals, anti-fungals. There is even a mouthwash!

That is the medication side of the infection/rejection balance. The practical side of it is to limit other ways that the body can develop rejection or infection. The first topic is easy to understand once you start to think on a germy level. Avoiding infection: avoiding germs from infected people, food, surfaces and, well, air! Of course, all people avoid germs. But, post-tx, if you are immuno-suppressed you are more likely to get severely ill from the smallest cold bug or skin rash, and your body is like a sponge waiting for these germs.

Here are some practical things that I will be doing to avoid infections-

From People:
I can't go in crowds at all, and a crowd is defined as a place where you can't control how close people are to you. Standing in a line, shopping at a busy mall, going to a restaurant at peak hours- these are to be avoided.

Limit germs entering my home. My house is gong to be like a little CG Germ World, and I won't be having many people over to my house, because they bring all their germs into my air space, furniture and etc. So no big keggers for me anymore (?)

Limit contact with sick people, people who were just sick, people who are incubating a sickness, people who just got off a plane. This means that I DO NOT want to see anyone who has felt sick, had a sore throat, fever, cough or sniffles in 3 straight days. Similarly, if a household member has been sick- I don't want to see anyone from that household. You have to live in a well-house for 3 days before I want you breathing by me.

Mask! You've seen my sport the surgical mask before. I will wear it when situations arise that are germy. For example, if I have to go clothes shopping, I will mask-up. If I go the the grocery, mask-up (grocery stores are the Mecca of germs). If I end up in a crowd, have to take an elevator, or etc. - mask it up! This is most important in the first 6 mos- 1 year.

Hand washing and anti-bacterial - I already sport the anti-bac, as you know. You will see even more of it, and I will encourage you to use it to.

Closed air places- With other people in a car, I will want to crack the window, and I can't ride on a plane for a year.

Hugging and lovey-doveys: I am usually an affectionate person, but I am not going to be huggy or kissy or cuddly for at least a year. Don't take it personally, but I do not want to hug you or get any kind of kiss on the cheek or forehead from you.

Random making out with strangers- apparently this is a hobby I have to forego. just kidding

Ok, enough for tonight, more TOMORROW, TOMORROW, I LOVE YOU TOMORROW.!

news and yoga

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 retention who can't live their own legs off the bed can do yoga. The thing about yoga is that a big component is muscle isolation, being able to stretch and use individual muscles, no matter how small the stretch or use, to keep the muscles warm, flexible, and pain free/ pain-less. The past few weeks, I have been practicing what I think I might have invented: Bed yoga. This is yoga you do in the bed, in case you get so tired that you have to go to bed immediately - voila - you are already there! Or, if you have so much equipment that doing yoga out of the bed is not safe (was true for me even 2 days ago). SO- the way you do bed yoga is:

Cystic Gal's Guide to Post-Transplant Bed Yoga

a) pay attention to your doctor about what muscles you're not supposed to be stretching and DO NOT stretch them. For example, my sternum is healing. There is NO stretching off right and left of center. No no no.

b) get lots of pillows for your bed including one hard neck/ lower back pillow.

c) start by isolating muscles from your toes on up to your head. Do simple stretches, or, in my case, attempts to lift/move/manipulate each muscle to a reasonable degree of stretch BUT NOT PAIN. Hold for 5-10 seconds while practicing good yoga breathing (which I had no idea was SO VERY GOOD until recently!! Yoga breathing on 40-20% lungs as the years went by is nothing compared to these bad boys I have now!!)

d) complete simple stretches if you can like drawing your knees toward your chest, attempting to sit "indian style," straightening and bending knees.

e) This is also a good time to massage the muscles and check out any sore spots or pains you may have.

f) ignore your whole abdominal area because it's all traumatized and you can't really help it now and so there.

g) you should be working toward a fuller range of movement in your arms and shoulders now that you have new lungs! Practice rolling shoulders forward and back, forward and back, slowly. Always end with them back, of course! Practice making the Y from the YMCA dance. Practice holding it for 10 seconds and breathing deep into your new lower lobes. It's super!!

h) This is a good time to put your hands on your upper chest and feel how much air you are moving when you breath slowly and deeply. Similarly, on your middle back.

i) no comment on neck situation yet, as I've had a line or 2 in my neck this whole month and haven't really wanted to do much in that area.

j) if you do yoga in real life, you can try some modified poses while laying down, making sure that none of them are weight-bearing. Go ahead, think of like one pose and think of how/if you could do it or any part of it, I dare you.

j) end by laying down- you're in bed! do some more yoga breathing and maybe it's time for a nap!!!

THANK YOU FOR READING POST-TRANSPLANT BED-YOGA BY CYSTIC GAL.

goodnight!

No Whammies, No Whammies!

I feel that this is my lucky weekend. No whammies. In the true tradition of random 70s references on this blog (which is odd, since I was born in 1980), I am starting to develop a theme for trying to get transplant calls which I will refer to as PRESS YOUR LUCK.

My last two tx calls came when I was very tired and once when I had worked out too hard, and my first reaction to the doctor on the phone was, "good, I'm sore from working out, I could recover during the surgery!"

This weekend, I have a pal coming in town as a surprise visit! We will have the very best time. His visit, is, of course, quite lucky. Also, I received this surprise from the blog world yesterday:

"I saw this cat and wished that CG would get her lungs really quick."

Weekend + Visitor + Magic Cat + B-Kitty's affair with Puppy = Good luck weekend!!

Have a great one, type at you Sunday!

Sunrise, Sunset. Sunrise, Sunset

I hope my buddy DW likes that title. :) or LK. or J-sing^. I could go on.

So, I've been down lately and trying not to write too much about it on the blog, because people get overly worried. I joked on twitter that there is a list in BOTH of my transplant binders (from both centers) about the "normal" feelings during the transplant process, and someone was tweeting about suicide awareness, and tweeted a list of signs. Would you believe that 1/2 of the sings of suicide are "normal" feelings during transplant? What does that say? I don't know, but it ain't good.

Here are the signs of suicide, (and this post is NOT a joke about suicide, so don't write me any nasty emails).

Suicide Warning Signs: (Available 6/28/10 http://www.suicide.org/suicide-warning-signs.html)

My side notes in italics

• Appearing depressed or sad[...]
• Talking or writing about death[...] - one of my binders actually recommends this.
  

• Withdrawing from family and friends. - worded differently, "your relationships with family and friends may change dramatically...
  
• Feeling hopeless.

• Feeling helpless.

• Feeling strong anger or rage.

• Feeling trapped -- like there is no way out of a situation.

• Experiencing dramatic mood changes - this, the binders blame on the steroids and other meds. I blame the experience itself, though it is certainly compounded by the double steroid rage that is also making me into a luscious lady!
  

• Abusing drugs or alcohol - this they warn against but I have known some that do it. Me, with my bleeding lungs, cannot partake to this degree.

• Exhibiting a change in personality. - doy.
  
• Acting impulsively. - What was that "live like you were dying" bullshit that I was tweeting about the other day. This also came up in my interview with wnpr, Am I having random fantasies of skydiving and going to Milan? Uh, no. I am having fantasies about long shopping trips at Target and waking up with a reason to get dressed (i.e. work). And I want a dog.
• Losing interest in most activities. - Yep.
  
• Experiencing a change in sleeping habits. - Ditto.
  
• Experiencing a change in eating habits. - Must work even harder on the fat making. I have succeeded by adding "ass-sitting" to the urban dictionary.
  
• Performing poorly at work or in school - Does being fired while you're waiting for lungs qualify as "doing poorly at work?"
  
• Giving away prized possessions. - In virtual terms, yes. I am the only one among my friends that has a will (the one for when you're dead), a living will (the one for when you worry that doctors will make you be dead), a health-care proxy (the one where you pick who is responsible for raising holy hell if your living will isn't followed and they try to make you be dead, or conversely, keep you alive after you are, sorta, dead.) --mine lists a wopping 5 people (which apparently is "a little weird," and do you know they make you put them in a horrifying order of importance that I have changed so many times that the "Patient Services Notary" knows me, personally, and tried to get me a date with one of the hot male nurses on my last dry run?
  
• Writing a will. - See above.
  
• Feeling excessive guilt or shame. - Considering I feel guilty even when I drive out of my way to the Full Service Only gas stations in Massachusetts, even though I am keeping them in business, I definitely have this problemo.
• Acting recklessly.- This one, apparently, is so common and crazy they had to list it twice. Does allowing my cat to eat Friskies wet food and two french fries per day count as reckless by proxy or munchausen-by-kitty behavior? 'Cause, then, I have it. And I have bought a lot of cheap rocker girl t-shirts at target for $8ea., but that is only because my fat and lusciousness has literally robbed me of all shirts of appropriate fit. (Take that, UnknownCystic and his friend and friend to BecketTheCat, UnknownFox).
  

So, there is my news in a nutshell. Once again, I am in no way suicidal. If I was, would I be on the damn tx list or fighting so hard to stay on it for these 8 months, 6 days, an about 7 hours? (Yes, I do remember the time of day when I forcibly hugged the head of Transplant Medicine, which I was told later, was a major event in the ICU, as it had never been seen before).

I am having some trouble with the fact that you start off on the list with them telling you that one of the criteria for listing is that you are not expected to live more than a year without a transplant. Then you spend some time on the list where everyone is making comments about how good your score is, how quickly you should get the surgery, how easy your recovery will be, and then it is 8 months later, and you think - only 4 more months and I'll be at a year, and then what? It is estimated that one person dies from CF every day in the USA (out of the 30,000 CF patients in the USA), and 19 people die waiting for organs, overall (non CF included).

I'm not saying that I'm dying here. I'm still living, and doing quite well at it, I might say. But I worry that some people think I'm guaranteed to get a transplant, and that I'm guaranteed to have an easy time of it, or even to survive it. And its simply not the case. The longer this process goes on, the more it seems like others think it's normal, and I think its... horrible. Others think that because my overall health has improved so much since October, and so has my activity level and ability to work- that I am "better"- let's not be confused- my lungs are not any better. It is only the work I've done to bring the rest of my body up to speed, to compensate for my lungs- that is better, along with, frankly, a lot of medical intervention. I joked with my doctor today, "I'm only one bipap nap away from respiratory failure," - and its true. My CO2 levels are still high. Not as high as they were, but TOO HIGH and without diligence they creep right back up.

All of my family members, and my friends here in Boston, and a lot of my theatre friends, or oldest friends from DG are so so so wonderful to me. Others, I feel, are banking on seeing me on the other side of surgery- perhaps because they can't deal with my medical situation, perhaps because they are just busy or have their own personal or family shit storms. I'm not upset with anyone, I just feel like - no one understands me but my bloggies, my immediate family, my most intimate group of friends here, and my old old homies. And you know what, that's a lot. But the question is, what about the other relationships? Can a gal live on 5 friends, 5 family members, and the internet alone? Maybe. Certainly, so far.

Now, I am rambling. And I don't even take Marinol anymore.

Goodnight and ps don't think I'm sad, I'm just all a-mess. Mess mess mess and now my cat thinks french fries are a midnight snack too. She is harrassing me. I leave you with this:

TV this week is Sofa King Awesome.

In case you missed it, its a very Cystic Gal themed week on the teeeveeee! Tonight, I missed these awesome two cystic gals on America's Got Talent- I was watching and fell asleep on my bipap!! Irony.

Tomorrow night, Thursday, on ABC- "Boston Med"- first episode of this documentary series by the same people who did "Hopkins" last summer - and who is the star of the first episode? A lung transplant patient and one of my very own surgeons, Dr. Camp. I have heard through the grapevine that it is a very moving episode that shows, in action, what is at stake in the timeline on the night of a transplant! I hope you watch!

And P.S. Remember, you can buy your Cystic Gal, Guy or Kid shirt HERE - you can buy different sizes / colors than your order- there's enough to go around!

Not me, but someone else.

It's a no go. Love and light to the recipient. The surgeon and his best dude came to see me, and I am more confident, than ever, that the system works and that it will work for me, and soon. They saved a life tonight, and it wasn't mine. Can I be upset about that? Sure. But I drove myself home with the wind in my hair, Eminem doing, "Beautiful" and "I'm Not Afraid," on the radio, feeling pretty blessed about the family, friends, and support from 100s of people I've never met, who are certainly not strangers. Pretty good life, hmm? And we'll do it all again tomorrow.

More then. . .

I came home to a huge grocery delivery that my loverly neighbors accepted and put away, and I'm gonna eat it all up and then pass out after my IVs. So far, I ate 2 puddings, 3 string cheeses, a coke, a gatorade, and next I plan to find something, you know, more dinnerly to snarf down. Must stay fat prior to surgery. OH YEAH, yesterday I bought 3 new cheap cute rocker girl t-shirts at Target, and I got my shirt in the mail from Ms. Piper!! SUPER!!

Good karma abounds.

Love and light to the donor family and to his soul in heaven or wherever he was planning to go, and love and light to the recipient and his family as they prepare to heal. Big prayers that they manage to sleep overnight, even on accident, so that they will be strong for the wake-up hours!!

Love, CG

You can't take it with you :: The SouthtownStar :: Guest Columnists

"Cystic Gal" is more famous every day! Kathleen Rooney, famed and sometimes infamous author, publisher, and my personal hometown homie, wrote this wonderful article about . . . ME, and her experience visiting me in Boston a few weeks ago. The article is focused on promoting organ donation and exploring some of the practical matters in the pre-transplant process. I hope this article encourages more people to sign up as organ donors, and to encourage their family to do the same.

An update on general news, I am feeling much better than yesterday. Please click the link below to see the article in The Southtown Star, by the Chicago Sun Times.
cg

You can't take it with you :: The SouthtownStar :: Guest Columnists

*****************************

First visit to the blog? Learn about me and the blog by clicking HERE.

Looking for a way to support your readership of "Cystic Gal," as well as my transplant fund? Click HERE.

Looking for the Jill Zarin article that was originally posted for Saturday, June 12? Click HERE.

We're Not Gonna Take It! No, We Ain't Gonna Take It . . .

(It was about time that I used a 70s song title for my blog post title, I had sorta fallen off the 70s wagon there for a bit . . . I'm back!! Or should I say, Brandon's back . . . )

Brandon Rees is Mad at the Universe, and He's Not Gonna Take it, Anymore!

Brandon received his lungs about a year ago at the transplant / CF center that I used to attend in the Chi. He emailed my sister and I after his transplant and we became fast internet friends (you know how that is). Brandon is the bestest, and because I am quite a lady . . . stop laughing . . . because I am quite a lady, he decided to take his manly powers and write this quite un-lady-like post for me.

I present to you . . .

Top 5 Reasons I'm Pissed that Cystic Gal Doesn't Have Her Lungs Yet:
by Brandon Rees

Story of, and Tips on, My First Dry Run for Transplant!!

I knew it was about to be my winning season!

Hello Readers!

First off, let me thank you for your readership and support in these last few days. Second, let me apologize to any of you who did not recieve the non-news of my first call for transplant, which I did not receive. Third, I am so tired that I have to go bed. This must not be a long post but I wanted to tell you the brief story.

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.)

Fwd: wbur.org: Demand Still Overwhelms Supply Of Organs In New England

Story today on WBUR regarding organ donation shortage in New England. Interestingly, the woman featured (not me) has moved here because her antibodies match this area better, whereas I went looking to the midwest where mine might match better. We both wait!

Check it out!

cg

---------- Forwarded message ----------
From:
Date: Tue, Jun 1, 2010 at 5:00 PM
Subject: wbur.org: Demand Still Overwhelms Supply Of Organs In New England
To: sent you this story from wbur.org:
http://www.wbur.org/2010/06/01/organ-transplant
Message : Yay!

On Natalia's Journey of a Lifetime

Recently, I was reading this post by the famous Natalia, from Canada, who prepared for and received her lung transplant while awaiting the birth of her daughter via surrogate. She hasn't written in a few months and thought that perhaps she would give up her blog altogether. Here is her posting:

http://natandmarty.blogspot.com/2010/05/writing-for-gratitude.html

regarding her feelings after transplant. In this post, she articulates a lot of the fears and anxieties that I have about the post-transplant experience. With the wonderful health and exuberant joy of breathing and living, comes a huge psychological shift that is hard to explain- but she does it very well.

Here is the response I wrote to her:

Step Two: The First Step Is Admitting You Have Medical Bills

I did not announce Step Two in the Get Back To Yourself Plan of 2010, which almost rhymes...almost - but alas, and forgive my familiar phraseology":

The first step in paying your medical bills, is to admit that you have medical bills.

So I spent most of the morning organizing them, and then, and I can say it- PAYING THEM. I realized something funny. If you get in the right mindset, it can be just as empowering to realize that you can pay your medical bills, as it is to, say, hoard your money in your savings and, say, avoiding paying your medical bills. That and some healthy acting skills and what we, in the theatre, call subtext:

That's not coinsurance for an out-of-state CT of... every part of my body....that's a new pair of boots . . .

The checks write themselves much easier this way.

Other than that, ear update: Last night around 2, still awake because I didn't take my sleeping pill because I was still praying that the Benadryl angels would work their powers over my ears, I had a horrible pain in my head and for about five minutes fearing moving, and then went to the bathroom to make sure both sides of my face smiled. They did, phew. (this might sound funny but it is also true).

I awoke to less ear pain, but ear pain nonetheless. I avoided calling the docs and finally, after advice from CysticLady, decided to split the difference between calling and not calling, and email them. My doctor didn't seem highly concerned, and so, since I was mostly thinking this was a freak accident, and reading on CysticLife that all my homies thought maybe it was some sort of migraine, I decided, bah, let it go unless it gets worse/comes back and then off to the PCP I go.

I avoid my PCP at all costs. See this post for elaboration. He seems perpetually annoyed that I am his patient, and considering the annoyance that would go into switching PCPs while on two transplant lists (holy referral nightmare and insurance claim denail, batman!, for cry yie)- I decided to keep him and maybe teach him to buck up and accept some patients with more than asthma and an ear ache.

Oh wait, I have those too.

Ok- goodnight from me and Beckaroo. I leave you with this random image, inspired by Ronnie's random image blog today.

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!

Love,
CG

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.

cg

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!

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!

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.