Friday, October 20, 2006

Hospital Hopping!

Roanoke Memorial wrote a release form to discharge Katy (allowing her to leave). As homesick as she is, she said she would rather go to another hospital than be sent home in her currently unstable state. We have gotten word from a doctor at the University of Virginia (UVA) that they want to take Katy as soon as they have a bed available. They don’t have an open bed available at the moment, but they said it could be anytime between this afternoon and Monday.

There are a few doctors at UVA that we are hopeful about, and they seem interested in helping Katy and are communicating well with us. We don’t know how much they will be able to help, but it is a start in the right direction. One is a GI doctor who is interested in her case, and may have even seen HPS patients in the past. There are too many factors to recount as to why we’ve decided to send her to UVA as opposed to other hospitals that we’ve discussed, but we feel this is the right place for her to go at the moment.

Please pray these things on Katy’s behalf:

  • That someone is discharged today at UVA to make a space available (for the sake of that person who is discharged as well!).
  • For Katy to make the transition well. UVA is about 2 hours away, and we’re not sure how she’ll get there yet since she needs some medical equipment with her, etc.
  • For wisdom for my parents as they have to decide if my dad will take more time off, or if someone else can go with my Mom and Katy (they have standing offers already).
  • For this stay at UVA to be short so she can come home and rest!

Thank you so much for praying!


  1. Lynne Kilburn Says:


    This is wonderful news! UVA is a wonderful facility and there will be so many people involved in your care, one of them will come up with something to help. And how fortunate that there is a doctor there that is interested in your case. I just know that things are going to work out for the best. We will continue to pray for you Katy and also for your mom and dad. Keep up the good fight and on that drive to Charlottesville, which will be soon, sing all the way!


  2. Elizabeth Harris Says:


    I have been keeping up with you through Amy C. I did read the wonderfully amazing account of your time spent with our Lord. Wow! What a peace you must have in the midst of this. I am thankful that He chose to reveal Himself, in the way He did, to such a special lady as you. You are a blessing to so many people.
    I will continue to pray for you!! Oh, I wanted to tell you, I have a “prayer plate” in my kitchen that I can write on and erase. The other day I was writing a name on it and Anna (7 years old) took the pen from me and wrote your name on the plate!!! We will pray for the transfer to UVA to go quickly and smoothly. May the Lord carry you on angel’s wings!! After what you have already experienced, it wouldn’t surprise me!!!! Love you girl!

    HE keeps on making a way,
    Elizabeth and Family

  3. Karen Tillman Says:

    Dear Campbell family, I am so glad that you have come to an acceptable decsion, and hope that it works out well on Katy’s behalf. Rest assured that you have a great many people in our area thinking and praying for you even though they don’t post. And of course all we want is to see Katy back to her old self. I am also excited to hear that there is a GI doc who has worked with HPS patients in VA. Finding those docs with any HPS experience are few and far between. I also hope that even though you guys are going to UVA that you can still easily maintain the blog. May God be with you and continue to make his presence known.
    Love you All
    Karen Tillman Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network Inc
    NC phone:336 954 3604
    NY office 1.800.789.9477
    my email
    my website

  4. Ruth Ann Myers & Ray Says:

    Thank you, Colin, for keeping us up to date and for the specific prayer requests (that’s so helpful). We are continuing to pray for Katy and all of the family. I must say, it is wonderful that Katy has her folks, you and Jenn, and Dan and Julie to be by her bedside and give her the needed support. You all are wonderful caregivers and may God give each one of you strength!

    Our love and prayers,
    Ruth Ann and Ray

  5. Carson Kistner Says:


    We are thinking of you and praying for you continually. Your journey is affecting me in ways I cannot even describe on this blog.

    May His mercies continue to abound as you head for Charlottesville, dear one.


  6. Cecelia Says:

    My dear friends in Christ, you have my prayers. As I have prayed for all of you since the day I first learned of Katy’s health, you have my love and support throughout this next phase of treatment and healing. Colin, many thanks for your post. Standing with you, all, for Jesus’ sake, Cecelia

  7. Aunt Doris Says:

    Katy, I’m sure that wherever you go, you will be a blessing to everyone around you. I’d like to repeat what someone else said about you, I don’t remember who it was, but I liked the expression and I think it is very descriptive of you - you have a virulent strain of Christianity!

    Love, Aunt Doris

  8. Heather Kirkwood Says:

    Dearest Katy and family,
    Best of luck with the new arrangements. I’m praying that the new team of docs. will have some ideas that might work better. I’ve had good experiences with university hospitals. They tend to be more interested in “us” the unusual cases! They tend to have a more academic interest. Plus, I LOVE medical students! There have been a few times it’s been the student that figured out something with me and not the seasoned doc. I think they find us interesting, great topics for papers etc. and they get drawn in easily with trying to figure us out. They research and dig and float ideas until they hit on something. Also, as they’ve usually been closer to my age than the docs. (that’s getting to not be the case anymore!) they are usually easier to talk to! I remember years ago when I was so sick I made good friends with one of the nursing students. Even after she finished her rotation, she’d still come visit me every day! We were similar in age and interests. And once when I had surgery she was doing a surgical rotation. She showed up for the surgery (after I was out) and said, “Hey, I know this girl!” Also, as far as the docs go - if you’re a great teaching case (which you would be) suddenly you’re getting reviewed by everyone and that just brings more minds to solving the problem.

    This is a real struggle with having a disease that only affects about 800 people in the world so far - so often you’re writing the book on how things should be done. It’s a terrible feeling when you want answers.

    And Katy, I’m so glad to hear you’re up to trying another hospital rather than going home too early. It might be hard because so many of your friends won’t be as close - but you just keep fighting the good fight. I know things will get better (I know, I keep saying that.)

    For Mom and Dad,
    We’re all thinking of you too here in HPSland. You all are great advocates, and have had a real crash course in rare disease medicine. Know that we’re always here for you, even if you just need to vent.

    Thanks so much for keeping us all updated on how Katy’s doing, and how to pray for her.

  9. Bob, Amy, Emily, Meredith and Abby Says:


    What a joy to see you yesterday! Words can never express my thanks for the wonderful things that you shared with me. You will never know (on this earth) how much they have meant to me. Your journey, although painful and not the road that would be chosen, has been just spectacular—both for you and for so many others that have been touched so deeply. (By the way, Meredith loved hearing the answer to her question about the streets!) I am certain that God will continue to use you and your testimony to touch people when you move to UVA. We are still praying for you every day– constantly! And remember, Dawn, I’m ready to walk with you whenever and wherever you need me!

    Thank you for your witness to all of us, from my new “longing for heaven” heart…

    Amy (for the Collins)

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