Casey Jo's Lung Transplant Journey: Day 2

Day 2 of Casey Jo's Lung Transplant Journey at UPMC

Today, Casey Jo met up with her financial specialist, met with the transplant coordinator, one of the surgeons, pulmonary testing, and met with a nutritionist/dietitian.  

The financial analyst went over what her insurances would cover and what they would not.

Her transplant coordinator answered some questions Casey had:

Q: "Can Hemi come to the hospital and visit me?"
A: He can't come inside, but it can be arranged for Hemi to be brought to the hospital garden area and  then Casey could go out to see him.

Q: "What happens to my used CF lungs?"
A: They can be given to research if you consent to it.

Q: "How long will the whole transplant take?"
A: 4-6 hours

Q: "I've seen movies about people getting weird cravings or super powers from a donor organ after transplantation, have you ever hear of that?"
A: Never

She also went over more of the procedure before the Surgeon came in to talk to her.  She commented on how healthy Casey Jo seemed.  She said she wouldn't be surprised if she isn't a transplant candidate just yet because she may be "Too healthy" at this point.  They want her to get as much use out of her "native lungs" as possible before they actually transplant.  However, they want to do it while she is still semi-healthy so she can make a great recovery.  (Every lung transplant is different, people with CF can seem a little healthier than other transplant candidates, but their disease makes them just as much in need as others with different lung ailments) 

By the time the surgeon came in, everyone else had pretty much answered our questions. He spent the remaining time talking to Casey Jo about Pulmonary Rehab, and elaborated more on the procedure.

Next, she did 3 Pulmonary tests:
Pulmonary Function Test

PFTs: (Pulmonary Function Tests) Casey's PFT has been getting low. As in the high twenties. However, the last time she had one done in Cleveland, it was 33%. Today it was 34% Go Casey Jo!!!!

Diffusion Study

Diffusion Study:  (Lung Diffusion Testing) Usually the norm is around 80%, anyone below 50% needs oxygen.  Casey's is 47% (She knows she needs oxygen, but is stubborn and is waiting until last minute to get it because it's "not pretty to wear.")

Lung Volumes
It's a "chick" in a box! (Kudos for you if you actually got that! -SNL skit lol!)

Lung Volumes:  (Lung Volumes) The norm is 80% also, Anyone with an obstructive disease such as CF is usually higher. Casey's is 150

Blood gasses being drawn

In correlation with these tests, the doctor ordered blood gasses to drawn.  If you know anything about blood gasses, you know they hurt like a mother!!!! (The go for the artery, not the vein!) Unfortunately, the Respiratory Tech tried 2 times and was unsuccessful. Bless her heart, she felt bad about it and was really nice.

Casey Jo walking on the treadmill

In addition to those pulmonary tests, she also had to walk on a treadmill to see how low her oxygen gets when she walks.

That took up most of the day.  The remaining 15 minutes we sat with the nutritionist and talked about pre/post diet. A CF patient can NEVER eat enough! No matter how much Casey eats, she will never get fat! (Lucky!) Some things that she told us that really stuck out from the obvious were food poisoning, and  what she will NEVER be allowed to eat ever again post transplant.  She has to be super careful on where she eats after transplant.  If she were to get food poisoning, if could really be detrimental to her health.  Some foods she must never be allowed to eat after transplant are exotic fruits, grapefruit, and blood oranges.  There is something in the fruits that react with her anti-rejection drugs. (Which she will have to take everyday for the rest of her life.) 

That pretty much covered today!


  1. oh my God, you write such a good story, I always love reading your post.
    visit my blog if you have time <3


    1. Thanks Doll! I visit your blog quite often, but when I use my iPad or iPhone, it doesn't show my's really annoying because I rarely use my PC!

  2. ugh this breaks my heart for Casey...I hate that numbers are such a big importance in the life of a CFer & I HATE that hers are so low! :( but yay for her PFTs for being the highest that they've been! :) oxygen may not be the most beautiful thing in the world to wear, but I guarantee that Casey would be able to rock it & look fantastic! :) I've been thinking about her sooo much and praying hard for her! I hate that they think she may not be a candidate yet bc she's 'doing so well'...which by the sounds of her numbers, it doesn't seem like she's doing that well at all! :( & I'd absolutely hate for her numbers to get any lower!!! :( send ALL of my love and tons of prayers for the WHOLE Higgins family!!!

    1. Thank you so much Kayla!!!! Prayers are working! Casey Jo loves looking at the comments. Comments like these really make her day! Thanks so much! You are so sweet!!!


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