Sunday, August 8, 2010

The Story in Steps (with dates) of CysticGal's transplant so far....

This information came from a text message conversation between me and CysticGal tonight.  It is a timeline of her transplant so far, in her words (with some edits from me):

Tuesday, July 27, 2010:
CysticGal is called for transplant and goes into surgery just before 9 PM.

Wednesday, July 28, 2010:
CysticGal comes out of surgery around 5:30 am and everything has gone really well.
CysticGal comes off of the ventilator around 11:30 AM.

Thursday, July 29, 2010:
CG is sitting up in a chair, has good energy, eating

Friday, July 30, 2010:
CG began retaining lots of chyle, and her body temp is really low at 95F.  She still felt good, walked around a lot.

Saturday, July 31, 2010:
They do more tests and find that there is a tear in CG's lymph system that runs down her abdomen.  This tear is crating fluid retention.  The chyle fluid is everywhere.  She starts to have a lot of pain and her blood pressure is becoming erratic going from very high to very low.  Her temps drop really low and they begin to warm her.

Tuesday, August 3, 2010:
CG has bronchoscopy and it went well.  They schedule a procedure to embolize the lymph tear for tomorrow.  CG has horrible pain overnight.  Her blood pressure is really really low as well as her body temperature.

Wednesday, August 4, 2010:
They give CG conscience sedation for her lymph node embolism.  Half way though her blood pressure bottoms out and they bring her out of sedation.  She had to so some crazy survival breathing.  CG dropped consent and they didn't finish the procedure because her blood pressure and temp and oxygen was not stable.
Over the night she had horrible pain. Around 10 CysticDad went home. Half an hour later, CG's temp drops to 94.5F, she was sweating and draining and in the worst pain ever. They paged the surgeon and head of tx medicine for them to come and assess the situation, and CysticGal codes. One of the doctors called CysticDad back. CG's blood pressure crashes and she passes out to wake to many people all around her trying to put lines in her. They finally get some lines in her and GC doesn't remember much after that.

Thursday, August 5, 2010:
This day they did attempt to embolize the lymph node while Beth was awake and they used "some crazy awake psycho drugs".  It went well.  It seemed to work at first, but alas, no, it did not.

Friday, August 6, 2010:
GC is hopeful that the procedure the day before worked, but they find that it did not, and plan to go aspirate the fluid left out in radiology the next day.

Saturday, August 7, 2010:
They find CG has at least four loculated areas of chyle fluid around her lung, and the doctors decide not to do radiology procedure.  They decide instead to go in for surgery on Sunday and fix everything.

Sunday, August 8, 2010:
Today they opened half of CG's chest.  They fixed the lymph node by suture and crazy glue.  They also drained the pockets of fluid.  It went well.  Now CG has double scar pain and general trauma to her chest, abs, and sternum.

Sister says she is recovering well from today. 

Thanks for all of the prayers and well wishes


  1. Sending positive vibes; and lots of prayers! Stay strong! You're never far from my thoughts <3

  2. Praying today will be a turn for the best yet for Cystic Gal. Does Cystic Lady also have CF and had a transplant? If so, wow! Your family is amazing!

    Linda in Louisiana
    Mother of Mandy (with the angels) Kyle, Hunter and Brady wo/cf and Jamie 24 yom w/cf

  3. CG,
    I hope this is the begining of recovery for you! Keep fighting!


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