Quickie post

I don't have the energy to post all the update but just wanted to say hello. Things are progressing every day. A little better and a little closer to transplant. Still in the hospital. Don't know if I want to go home or not. Don't know if they want me to go home or not. A little sick of hearing every one say, "Obviously we don't expect you to make much improvement, but [insert thing they want me to accomplish anyway, even though they just told me I won't be able to do it.]"

But f that, I say. I walked for 10 minutes today and did not have a deep de-sat until I stopped walking. Down to 8L exercising, 4.5L resting.

Did my will and my power of attorney and all sorts of my "bidness" with my parents over the past few days.

Preparing for surgery. Making a music list to push on the surgeon because word on the street is, "He's into that."

Still enjoying Florence Nightingale Syndrome, hoping to further develop it for Tx team.

Still enjoying time in the cocoon I have made for myself that I am realizing is my family and my friends that are as close as family. Glad I made this cocoon and that it gets smaller and simpler everyday.

Now, to sleep. With Bipap.

Love, CG

Comments

  1. Bless up to the the fullest. You are of a group of the toughest people I know. My daughter,Hazel is 8 and has just had some lung removed. She was struggling with some germyness from the morphine she had after her epidural was taken out and through her sobbing voice, writhing in pain enough to make me cry, she said "sometimes my life just comes at me too fast." I'm glad I enjoy crying. I truly appreciate your stream of conciousness. tweet it when you can!

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  2. for music .. Cage the Elephant does, No rest for the wicked. Clutch is good work groove for me too. Good luck.

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  3. Love you! Teeda Beans :)

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  4. Good to see you posting!! Praying for you! Praying for your health to remain stable until transplant!!! I've been in your exact position, so know what it feels like!! Hang in there!!! Stay positive! God has his perfect timing for transplants!

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  5. Thinking of you!!!!!!!!!!!

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  6. Hey girl! Glad to see you posting. Thinking about you and hoping those lungs come soon. Take care!!!

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  7. Ooh, the Surgeon Mix. Hope we get to see a track list.

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  8. Oooo, can you post your playlist when you come up with it?

    Ronnie

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  9. Sounds like progress to me.

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  10. I love you so very much... thinking of you every minute and sending positive, healing thoughts your way. XOXOXOXO

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  11. CG how did I miss this earlier? I check on you frequently! I have some things for you but our nurse pal could nto see you this week so just know I went shopping and got you a coupla cozy things and some sweets for the sweet - that's you. It seems I know you better now from reading your insightful and honest writing and I am grateful for it.

    I am saying prayers for you of all sorts and sending good wishes and thinking of you at many moments, expected and unexpected. You are teaching me so very much.

    Love xxxooo

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