Thursday, August 26, 2010

One Night Only, One Night Only

Hello CGers!!! It's me. Boldly, bravely, I let my Dad bring me my laptop for tonight. I have been enjoying a computer hiadus, but wanted a little time to write to you y'all and doodle on internet. Who knew I could go a whole month without my laptop? WHO KNEW!?

Well, I've been busy. And tomorrrow is already my transplantiversary!! (one month). My surgery started on July 27th and ended on July 28th! I know there is a lot to explain about all that has happened but I'm not gonna handle all that tonight. Just recent news and such.

So, it looks like I hope to get out of the hospital next week if we can finally figure out everything with my lymphatic system. I started eating this week, and long and short, it agravated my lymphatic system a bit, again. (Not at all like before, but still, there was fluid retention and other random details.). So, 4 more day of IV nutrition and clear liquids for me, and then we'll try, I don't know, eating again. The IV nutrition keeps me going pretty good, I'm not even hungry except in my mind. - So alas, do not worry, I am not suffering in any sort of hungry way.

I simply cannot wait to go home and sit on my own couch, hang with my parents in my own house wearing my own clothes with less wires and crazy tubes coming off me, use my treadmill, eat some food, hang with my mom and do weird facials, go for a walk OUTSIDE!, sit on my porch with no O2, see my cat, see my cat, see my cat, walk to the grocery store, etc.

My lungs are superb. I think they are boy lungs, but who knows? They are strong and throughout this whole mess, they've been in tip top shape! My resting o2 is usuallly 97 or 98 but if often 100! When I exercise it is always 100 (that's right, it goes UP during my exercise). It has been dreamy to sleep with no bipap, and no oxygen on.

I am having way less pain in the past few days although we uncovered some of the reasons that I was having such erratic pain differences with excercies (another post for that, my friends).

The nurses at Brigham and Women's are f ing superb. I am in love with all of them. They are all so wonderful and fabulous at their jobs. I literally have only had like 3 momentary experiences where I was like, WTF was that? The rest of the entire month, every minute, it has been wonderful to be taken care of here.

With all of my problems, I am getting to know the team here very very well. So, now, instead of trusting just 2 of the docs, I trust about ... MOST of them. Which is wonderful.

I am so thankful to everyone who has been writing comments, emailing, and who sent postcards, even asking family and friends to send post cards. I must admit I got one creepy one, which will be the subject of a later blog post- but other than that - I still love them!! It's not too late to send one. It's crazy to realize where some of you bloggies live. I always think of you living 'IN COMPUTER." I guess that is incorrect.

My family and friends and all of you have been so amazing. I have never felt more loved and I appreciate every ounce of it.

So many posts to follow, but I'm giving my computer back tomorrow, so probably not another long one until I am home . . . ! I must stay in the zone of healing, walking, not eating (?) and such.

I have unguarded comments for now. Wish I had before my tx, but alas, I just did it. All of your comments will now appear moments after you write them without my review. Thus, I apologize for any spam/porn/random b.s. comments that appear. I will try to delete them.

q/a: Everyone wants to know some facts:

Do I still have chest tubes in? Yes, 5 bulb thingies.
Am I on o2? No.
How far am I walking? Only about 1/3 mile per day but that is a long long story and do not leave comments about it.
Did you walk up some stairs yet? Yes. It went well.
Are you still a rock star? Um, totally.

Goodnight, CG


  1. Congrats on losing your fluids and your awesome O2 sats. Get home soon!

  2. That is so much O2! We are still rooting for you every moment of every day! xoxo

  3. You are a ROCK STAR, and so are those new "boy" lungs! LOL! I am amazed that the O2 went up when you exercised! Keep on rockin' those new air bags! You're amazing!

  4. I'm SOOO happy to read this regular old CG-speak. Have missed you SO much this past month. And no, I don't have my lungs yet. WTF is up with that? I think I am going for a record wait-time. Yay for you, though! I'm thrilled that your caretakers are up to par. We have such high standards, and it's rare to be at ease when so much is at stake. lovelovelove you! Can't wait to read more!

  5. Ahhhh. CG. I check daily for this update. Soon you'll be too busy to update, and I can't wait. I look forward to un-updated pages because you are out. In fact, I can't wait till this page goes without update. You will be out moving. You will be out getting 5 dollar footlongs at subway. You will be out grabbing the mail, and running back inside because it isn't hard. You will be "hopping in the shower," you know, real quick, because you've got somewhere to be. You will be running back inside because you forgot something... And then running back outside, because, well, why wouldn't you? You'll be singing in your car. You'll be walking in the rain, but you'll be enjoying it. You'll forget your pill box, but it's just one flight of stairs, no big whoop. You'll sing in the shower. You'll get dressed without coughing so much you sweat through your shirt and have to change. You'll get the damn footlong because you're hunger demands it. You'll feel the release. Nothing will be overwhelming. You'll fall asleep from exhaustion... but you WON'T wake up coughing. You'll get the hiccups, and it'll hurt, but it'll be okay. The cashier at Target will tell you, "Oh I had that cold last week," and for once, he might be right.

    You're going to cough, at some point, and wonder, what the hell was that?

    Ahh. CG. I love you.
    B. R.

  6. CG Im so excited for you! My blog and fb got hacked so Im mega late catching up BUT yeah Im way way excited!!!! Ahhhh Ill fb you again so I can keep up with everything and as always wish u the very best of luck!!

  7. You are a ROCK STAR!!! Seriously, I am so happy to hear that you have turned that corner. WOOT WOOT!!! Go YOU!

  8. So good to hear from you directly again. You rock.

  9. CG you are the creme de la creme, the cherry on top, the de-lightful, the de-lovely! I am thrilled for you and in absolute admiration of your perseverance. My peeps and I have been rooting for you, as you know, and the sky is blue today - literally and metaphorically. Thanks for taking the time to post and congratulations on having such an eventful start to your 31st year of life. xxxooo

  10. it's great to read such a wonderful update, keep up the good work and healing. My first few months were tough, but the third month its like a switch flicked and things really improved.

  11. So great to see this CG!!!!! Miss you and can't wait till you are out and home!!!

  12. I'm just glad you're posting!!!

  13. Congratulations! I'm glad to see you're doing so well, and I hope you get to go home soon and enjoy all the wonderful things about home.

  14. I've been MIA for most of the month and you are the only blog I've kept updated on. It's LOVELY to see you posting again, we've all missed it. CG, as usual, you ROCK!!!

  15. Can we have a CG poem?

  16. I am so, so glad that you felt up to posting! I am so glad the lymphatic system is slowly getting figured out! I will be even more glad when you bust out of that place!

  17. @ Garfield Roscoe- best comment ever. I may repost your comment as A post, would you mind? Very moving.

    @Bankrgrl - Thanks. I miss reading your stuff and our internetings.

    @CysticDad - not enough concentration/quite to write poems in the hosp. sorry. brilliance strikes me un-announced. ha.


Thanks for commenting! Your comment will be posted ! -CG