Casey Jo's Lung Transplant Journey: Day 4

Today was our fourth and final day. Casey Jo met with her social worker and one of the transplant Pulmonologist. 

 
Casey Jo and her awesome social worker Brittany

The meeting with the social worker went great. She was so kind and very informative. She talked about fundraising, Angel Flights, insurance and a few other concerns. She told us that it is important to start fundraising now even if I'm not eligible to be put on the list at this time. It makes it easier to start early because post transplant is expensive too! With follow appointments, travel, and anti-rejection drugs, costs or those can get overwhelming. The Angel Flights is a program that allows patients 'on call' to be flown to Pitt from where they are. Brittany gave us information to look into that idea. 

The meeting with the transplant Pulmonologist went as well as expected.  She said basically the same things we have already heard previously this week. Some of the questions Casey asked were about her rejection meds. She answered as best as she could since we are not in that situation yet.  She basically told us not to be surprised if Casey Jo is not eligible for a transplant at this time because she seems "too healthy" at this point. There is a fine "window" of time when Casey should be bad enough to be on the transplant list. They want her to get as much use out of her "native lungs" as she can. They want her sick enough to need it, but not too sick where she can recuperate from the surgery.  The Doctor also said that it is great that Casey came in this week to get established.  Even if she is not eligible now, UPMC will keep reevaluating her every 3-4 months to make sure she isn't getting any worse.  If she does get worse, she will be able to get on the list quicker since she is already established. All the doctors are getting together Tuesday for a meeting where they discus Casey's case. We should get a call by next Wednesday letting us know whether she is on the list or not. We are feeling positive she wont be a candidate at this time.....but you never know! This has been such a wonderful and overall positive experience so far. 

Thank you so much for all your prayer and sweet comments!!!!
 
If you are not a fellow blogger, and you are trying to comment on this post below, make your comment in the comment box, and under it says "Comment as," click on the drop arrow to the right of it and select anonymous. Just make sure you add your name in the comment so I know who commented. All of your wonderful comments really brighten Casey's day
 


9 comments :

  1. Jessie I am so proud of you for doing all this for your sister. I know when I was dealing with my sister's illness, there was not very much info about it and most had never even heard of it, including the Doctors. There is a specialist in Ky that deals with Progressive Supra Nuclear Palsy and as far as I know she is the only one. Dr. Litvan. Very nice lady and very informative. Unfortunately they more or less experimented with different drugs to try to stall the disease. My sister donated her brain to science hopefully so they could learn something that would help someone else. Very few cases in the US. The Mayo clinic is the one who diagnosed her. She went thru all the same type of testing that Casey is going thru. It is good to know that at least there is something they can do for her. God Bless and praying for miracles for a beautiful young lady and her equally beautiful family. Love you all, Ruth Whealdon

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    1. Thank you for sharing your story. I am going to research your sisters disease now so I understand it better. Thank your for your sweet words and prayers! :)

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  2. Glad we could all be a part of Casey's journey. Glad all went well.....

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  3. We're all thinking of you little one

    Love and hugs,
    Westfield buddies

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  4. Finally getting around to catching up on your blog. Where do things stand at the moment? How is Casey feeling? Always thinking of you and your family. Prayers for answers, health, hope, and continued strength! -Dawn Bellotti

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    1. Thanks Mrs. Bellotti! She is currently back in the hospital. Her PFTs have dropped from 27 to 24%. She is on a powerful med right now that has some serious side effects... That's why she has to be in the hospital. She will be there for at least 3 weeks. Thanks so much for the prayers!!! I will be updating soon! :)

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