Casey Jo's Lung Transplant Journey: Update


Me, Casey Jo & our Mom
 
Casey Jo finally got her phone call yesterday.  I decided to post it today since today is Cystic Fibrosis Awareness Day....It seemed fitting.
 
UPMC called Casey yesterday and told her that she is not eligible at this time to be on the lung transplant list.  She is too 'healthy' at this time.  They want her to have as much use of her 'native' lungs as possible. They will be reevaluating her every 3-4 months, or if she gets worse, she can come in and they can retest her.  Since she has already gone through testing, she already has a foot in the door.  All she is waiting on now is to get progressively worse to be eligible. 
 
How does she feel about this?
She said she is okay with what the doctors said, but would just rather have it sooner than later.  "I'm tired of living life this."
 
 I, personally, have mixed feelings about it.  I am worried about her going through the surgery.  On the other hand, I hate seeing her have a hard time breathing, having coughing fits to where she cant catch her breath and being constantly worn out.  Thank you so much for all your wonderful comments and prayers! We greatly appreciate them.
 
This isn't the end.  This journey is just beginning! I will post updates whenever anything comes up.
Thanks y'all!
 

6 comments :

  1. Hi Jo, I am sorry to hear about your sister. I think that sometimes we go through things which can make us stronger. I also know that with God all things are possible and that he does not give us anything that we can't handle. Thinking of your and your family during this time. God bless

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    1. You are so right darlin! Bless your heart for your sweet comment! It means a lot! :)

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  2. I Agree With Casey, I'd Rather See Them Do It Sooner, You'd Think They'd Do It While She Was Healthier To Go Through The Surgery...... Thanks For Updating, Jo You Are The True Definition Of What A Sister Is......

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    1. You have got to remember the person in the worse condition is the one in line that gets the lungs..When they do call you to come in for the transplant, they call in the the primary candidate,and a back up candidate.. My first call to upmc I was the back up. In the orientation class they did not tell me that.. When I was in pre-op I saw the lady that received the lungs.. She was so much worse than I was,and I prayed that she would be the one that got the lungs.. I had a total of 3 dry runs before I finally got my lungs..When I did get the call I was sitting in dr Lee's office

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    2. Actually, I am glad you mentioned that! They did tell us that. They told us over and over so that when the time comes, if she doesnt get the lungs, its not a major disappointment. (Even though it will still be disappointing, it wont be a big shock) It sounds as if you are doing well!!!! I hope you are! So glad you got your lungs!!!! :)

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