Friday, June 4, 2010

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.

On Tuesday night, I received a call here in New England that there was a "lung offer" for whom I was a match, but that I would be the backup recipient- meaning: there was a first candidate who also matched the donor lungs. The Dr. F-Calmie^, first called me cryptically in the afternoon to ask how I was feeling. This, of course, I complained about promptly on my blog because I broke into a cold sweat that anyone called me so randomly just to shoot the shit with me. My dear Internet friend R-Chitown^ told me, "They called me like that and then called back an hour later that they had some lungs." Ohhhh... I said (swallowing my bitchy attitude). Well, R-Chitown was right! But, it seemed that they were fairly confident in the primary recipient. About another hour later, they asked me to go ahead and come in, and I made this video (see below)

Rest assured, I'm not actually peeing my pants.

Then, I went to the hospital, hung out with my friend J-Sing^ and received many a wonderful text from my supporters while my sister, CysticLady^, posted THIS. and I texted fun facts to my blog. I was at the hospital from roughly 7:30pm til 5:30am, but overall it was an okay experience. No sleep, but an okay experience, and more than anything I was relieved to be moving forward in the process!!! To my knowledge, the primary recipient received the lungs and so big love and light and prayers to her and her family, as well as the donor for giving the gift of life to so many.

This email is getting too long so I will end with this:

Ten Practical Tips on Going to the Hospital When You Get THE CALL:

1) Do no pee before you leave the house. They will want you pee, and they will want it now!

2) If you have 15 minutes, do your nebs that will be due in the next 12 hours, or pack them to do at the hospital (by the time I was home, slept it off, and woke up, I had been neb free for about 24 hours- yuck city!)

3) Pack your extra inhalors. Pack your extra inhalors. Pack your extra inhalors.

4) Your phone will run out of battery. Too many people will text you. Texts eat the battery. Buy an extra charger now and put in the bag with your inhalors. Chances of forgetting your charger even with a trusty list: 95%. Chances of having a phone that can use a universal charger: 1% Having a friend as wonderful as J-Sing who will drive to your house and back at midnight: Priceless

5) Wear a tube top and only a tube top above the waist. This will prevent you from being forced into a much-more-naked-n-breezy hospital gown. If they doubt your cottony capabilities, flash them and they will then believe you. (just an idea, I would never do this . . .)

6) If you have your pick of best buddies, do the following 1) Thank God that you have such wonderful friends/family 2) Pick the one that can stay up the latest 3) Be prepared to tag out friends as the night gets late 4) Sing songs or play the new game J-Sing and I invented, Pantozee-Yahtzomime: It's like Yahtzee but you have no dice.

7) Try to limit texts and phone to family and those in town that can DO THINGS FOR YOU. You love the others but the phone might literaly explode. Designate an online representative.

8) Spread the news using delegation so that no one is left outta the loop.

9) Take your camera for amusement and future amusing blog posts.

10) Bring your Ipod and cheap, big headphones that block out the noise better and stay on your ears in weird medical positions. They also send a clear message of, "I'm not talking to you!" to ER personnel, who don't have a LOT to do with your transplant and who might want to ask you 50 questions about whether or not you feel safe at home, even if you live with a cat. (I am afraid of Beckett the cat, but no one wanted to write that report!)

Ok, more later, love love love,
wow, i really don't know how to write a short anything!

Cystic Gal

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^Pseudonyms all created using the top secret CysticGal Pseudonym Creation Equation (CGPCE)


  1. 1) is it weird that transplant calls apparently cause crazy peeing on my part? every time i've been in the OR (where you wait it out for the last 2 hours or so at my hospital -- primary and backup together) i've had to ask the nurse to disconnect my IV so i could get up and pee. ridiculous.

    2) YES! and accept the kindly offer of the transplant nurse to call the RT for a little pounding before you go down, even if you are elated that you "might never need a CF treatment again!!"

    3) i'll say it again: pack an inhalor!

    4) i've never felt such simultaneous love and hate for my phone as when it was buzzing off the hook with texts -- this is why God invented FB, chica. people can just message you there! (PS: so glad i was one of the texters!)

    5) i wish this worked at my hospital. it's a gown or nothin' (i have, at times, seriously considered nothin')

    6) sister help too.

    7) sisters help EVEN more here, but you knew that.

    8) someone will be left out of the loop, and it will most likely be someone important like your grandmother. warn people ahead of time that it's not personal.

    9) yay! (and for future reference, i find the picture of you holding up fingers to indicate the dry run number is always fun...)

    10) ipod yes. unfortunately the earphone thing doesn't fly at col pres, but we are in real hospital hospital rooms instead of the ER, so i guess it's a fair trade.

    love you and so glad you survived your first (and hopefully last) dry run. didn't we say next friday for lungs?

  2. Still sorry it was a "no-go" for you, but know the right ones are waiting for the perfect time. I really appreciate the tips list and the extra cell phone battery idea is brilliant. I keep an extra charger in my suitcase that I keep packed all the time for when Jamie goes in the hospital for a tune up. He is starting a new round of IV's this morning. His visit to Tulane yesterday showed his FEV 1 is 29% and he lost 3 pounds in 2 weeks, so I guess he was correct 2 weeks ago when he started asking for IV's. His insurance won't pay for the little pressurized balls anymore and he is having to learn a new method this morning. He really hates being tied to the IV pole if his meds can be put in his pocket and he can hit the road. Hope you can catch up on your energy and sleep.
    Linda in Louisiana
    Mother of Mandy (with the angels) Kyle, Hunter and Brady wo/cf and Jamie 24 yom w/cf

  3. heheheh great list!!!! :)

  4. You're not cool unless you pee your pants :)


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