one day at a time . . .

Transplant Info…


I’ve been following Cystic Gal’s amazing post double lung transplant progress ( She is doing so well! Her most recent blog answered some questions from followers. I found them very helpful so I wanted to post them here so that I would always have them for reference:

CysticGal Questions – Answered (mostly)

Q:  Where should I send CysticGal get well gifts?
A:  Send them to her home, and CysticDad will bring them to the hospital.

Q:  What should I send?
A:  Anything except flowers.

Q:  How long will CysticGal be in the hospital?
A:  Maybe about two weeks.  Let’s look for her to get home on her birthday.

Q:  Why would CysticGal need a bronchoscopy after a lung transplant?
A:  Bronchoscopy is a useful tool post transplant.  It provides a way to look visually at the anastomosis (where the lungs are put together), the general look of the airways, a way to biopsy to check for rejection, and a lavage to check for bacterial infection, viruses, or fungus.

Q:  Do you know anything about the donor?
A:  It is actually quite a personal question to ask a transplant patient about their donor.  CG says that she knows nothing of the donor except that the size match was perfect.

Q:  How different does breathing feel?
A:  CG says her new breathing is “huge and weird like a big empty cave.”  She is still wheezy and having trouble coughing.

Q:  Do you still need to continue the daily CF therapies?
A:  For a few months tops, you will still have to inhale Tobramycin and perhaps another inhaled antibiotic.  You will no longer need Pulmozyme, or to do any kind of Chest PT.

Q:  Since you still have CF, how does that effect the new lungs?
A:  The new lungs will not have CF, and will not develop it over time.

Q:  What are the new meds like?
A:  CG says that the new meds are overwhelming but that they are still being managed for her.  Tomorrow she will start recording them on her own.  She thinks there are “so so many.”

Q:  How’s the scar?
A:  CG has not yet looked at the scar in the mirror.  She says it is very close under her breasts so she hasn’t seen it yet really.  She believes that she has received an accident boob lift.  For serious.

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