Today Casey Jo had an appointment at UPMC. It was to see if she has gotten bad enough to be placed on the Transplant list. She had to have some test done again in order for them to see where she stands.
The first test she had to have done was the 6 minute walk. It consisted of RT's (Respiratory Therapist) checking her oxygen level, heart rate and blood pressure before, during and after the walking test. She started out with her oxygen level in the low 90's and it just kept dropping from there. (This is WITH oxygen on!) She got out of breath and her oxygen level dropped so the RT's stopped her test.
Next, she had to do her PFTs (Pulmonary Function Tests) and her ABGs (Arterial Blood Gasses.)
Her PFTs are still a low 24. Then she had her blood gasses drawn. These RT's must have been awesome because she said she didn't feel a thing! That is rare!!!! If you have ever had blood gasses drawn you know they hurt really bad!!!!
Once the PFTs and ABGs were over with, we all met up with Maureen, Casey's social worker. She was very sweet and caring and talked to us about getting things in order for the transplant. Such as fundraising, expenses, and talking to Casey about a living will.
Finally, Casey met up with Dr. Pilewski & his Fellow Dr. Sid. They were very informative and asked her a bunch of questions about how she has progressed. At the moment, Casey hasn't been eating...anything at all. When she does she gets sharp pains and gets very nauseous. (It is her gall bladder. The doctors know this and her surgery is scheduled for next week.) However, she hasn't had an appetite in over a year and her weight has been declining...even with her feeding tube. So, Dr. Pilewski wants to wait until she gets her gall bladder out to see if the weight loss/loss of appetite is because of the gall bladder, or the progression of her disease. Then we will go from there! When you are on the list, you get the lungs in order of severity and if it is a donor/recipient match. We are hoping for the best!
Once we left, we stopped at Chili's for dinner...even though poor Casey didn't want to eat :(