Casey Jo's Lung Transplant Journey

If you have ever read my blog, you know about my sister Casey Jo.  (Click Here if you are new and want to read Casey Jo's story.) Casey Jo was diagnosed with Cystic Fibrosis as a baby. She is an amazing little fighter! This past weekend was the Great Strides walk for Cystic Fibrosis.  We did an amazing job! Team Casey Jo was 3rd in raising the most money!!!

5/20/13 Day 1
Casey Jo & Me
 

Today was kind of bitter sweet for me.  Casey Jo's disease is progressing to the point to where her doctor thinks she may be eligible for a lung transplant.  This is good and bad.  From the medical stand point, it scares me to know my sister is getting bad enough for the doctors to contemplate a transplant.  (Especially since I am in lab school, the thought of infection or rejection scares me to death.) However, this is good because if she gets a whole new set of lungs, she can Breathe Easy. So, since she is at this stage of her disease, her doctor is sending her to Pittsburgh this week for testing.  Casey Jo and I want to document her journey together.  So I will be documenting what happens this week.

Casey Jo with our Mom
 

May 20, 2013
Day 1

Today we had to be at UPMC at 7:30 this morning for Radiology testing.
She had 5 tests done:
  • CT (Computed Tomography- to look at the lungs and measure them)
  • Barium Swallow (To check for acid reflux.  If she would be a candidate, they need to make sure she doesn't have acid reflux so if/when she gets the transplant, she won't aspirate on food.)
  • VQ Scan (Ventilation/perfusion scan- nuclear lung scan that radioactive tracer gas or mist is inhaled into the lungs. Pictures from this scan can show areas of the lungs that are not receiving enough air or that retain too much air. Areas of the lung that retain too much air show up as bright or "hot" spots on the pictures. Areas that are not receiving enough air show up as dark or "cold" spots. During a perfusion scan, a radioactive tracer substance is injected into a vein in the arm. It travels through the bloodstream and into the lungs. Pictures from this scan can show areas of the lungs that are not receiving enough blood. The tracer is absorbed evenly in areas of the lung where the blood flow is normal. These areas show up with the tracer distributed evenly. Areas that are not receiving enough blood show up as cold spots. -according to Web MD)
  • Chest X-ray (To look at her lungs)
  • EKG (A standard heart test that is done)
After all that was done, we went to Transplant Orientation.  There, we listened to a doctor talk about the process of getting on the 'list', process of the transplant, signed papers, asked questions.  The doctor was nice, compassionate, and very informative. 

Just because Casey is going through this process doesn't mean she will automatically get on the transplant list.  She will be doing a series of tests this week to see if she will even be eligible to even be on the list.  She may not even be bad enough to get one. Which is good and bad.  Part of me hopes her health isn't bad enough for one.  The other half of me wants her to get one so she can breathe and know what it feels like to do more things she is physically not able to do. The doctor said one year after transplant, 85% of patients are alive.  Five years after transplant, 55-60% of patients are alive. Those numbers scare me.  However, a friend of the family had a transplant about 16 years ago and is doing very well.

Do you know anyone with Cystic Fibrosis? Did they have a transplant? How did it go?
If you have any questions, Casey Jo & I would be happy to answer them :)





6 comments :

  1. Thanks for sharing & updating us Jessie <3 BTW can I also share your Post?

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    1. Thank you! Of course you can share! :)

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  2. Good luck Casey Jo! <3 We all love u!

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    1. Thank you so much! She feels so loved with all your lovely comments!

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  3. UPMC is great.. I had a double lung transplant in april of 2012..I have met people that has lung transplant over 20 years ago and doing great.. As for the 55%-60% that are still alive after transplant..The ones that did pass away, they said they don't know if they died because of rejection,accident or something else.. Best of luck with everything

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    1. That is wonderful news!!!! Congrats on your new lungs!!! If you would ever wish to talk to Casey Jo, her email is: caseyjhooper@yahoo.com

      That just gives me even more faith! :)

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