Hi everyone. Here are some answers to questions we’ve been getting:
Caitlin’s “number” is not a number on a list, in a line where you wait your turn. It’s a score, and the higher the score, the more sick and in need you are. Generally, everyone on the transplant list is somewhere between 30 and 70, though technically the score range is 1-100 . Everyone in Pittsburgh seemed to think she would be in the 30s, and the fact that her score, set by the national organ bank, is 44 is good, since a higher score means you are a higher priority.
Two other major factors determine who gets called: blood type and size. For example, there may be someone on the list who is the same blood type and size as Caitlin, but he or she could have a score of 60, and s/he would get called first. There could be someone very sick with a score of 80, but with a rare blood type, who could end up waiting longer than someone who is a 40 with a more common blood type.
One of Caitlin’s biggest obstacles to getting lungs is her small size. However, you just never know. She has a common blood type and has virtually no antibodies (which can make matching difficult), so those are good things. There is definitively no way of knowing how long the wait will be.
It’s an unsettling feeling, though, to know that we have to be ready to GO–at any time. The call could come in the next five minutes, or it might not come for months and months. We’ve got little bags packed, and plans in place, but when she does get the call, we have to be ready to immediately contact the list of medical transport services to see who can get us to Pittsburgh within the required four hour time frame. We are fortunate to be heading into the summer months, when snowstorms aren’t an issue.
And we are fortunate–and very grateful– that this is even an option. Every Mother’s Day has been poignant for me, since her diagnosis at age two, and this one, especially so. I am very grateful to be this wonderful young woman’s mother.
–Maryanne
9 Lives Notes 
I am thinking of you both every day. I miss you and you are in my heart Caitlin. I am hoping and praying that you will not have to wait much longer.
❤
Thank you for the update, Maryanne. You, Caitlin and Nick are in my daily thoughts and prayers. Prayers for patience and strength while waiting, prayers for healing hands of the surgeons, prayers for a strong recovery. Sending love to all on this special mother’s day. xo
xo Judy
It was so great to talk with you the other day on our birthday Mare, and I’m happy to know about this blog to keep myself updated on Caitlin’s situation. I will be checking in regularly from here on in.
Please know that you all are in my daily prayers and that my pastor and church will be with you as well. I’ve been told that I have a pretty good connection with “the man” (as they say) so get ready!
I just keep remembering that spunky little seven year old girl years ago, on a canoe in the lake by your house, telling me that she was going to find a cure for CF. What a wonderful spirit!
Lots of Love to you all,
Leslie
Thanks, Leslie ! Xo