Thursday, April 05, 2007

Remicade at Work

Katy is fighting her way back from her last HPS flare-up. The last few weeks have been very hard, as most of you know. When Katy has a flare-up it depletes her energy. That is where she was when she started her Remicade treatment yesterday. She doesn’t remember being taken from one hospital room to another because she was sleeping so soundly when the nurses wheeled her bed down the hall. When the nurse had to wake her up she looked around in surprise and said, “What? Where am I?” We all laughed. That’s when you know you’ve had a great nap.

The Remicade treatment yesterday was just the beginning of a series of three treatments. Her next one is two weeks from yesterday and her third one is in four weeks. After that she will receive them every six to eight weeks for the rest of her life or until another drug is discovered to treat this syndrome. The treatments will take a total of four hours. There is a slow drip IV and then a one hour observation time afterwards to be sure there is no allergic reaction. Because it was her first treatment and not everything was ready when we got to the hospital, we were there a total of seven hours. Katy and I talked about taking along some projects to do next time so we can redeem the time.

The nurse who gave the Remicade treatment was very informative. She talked to me about how Katy might feel the next two days and what to expect. I am finding her information has already helped us today. She told me that after the second day, Katy should start feeling the full effect of the drug and begin to feel better.

Thank you for the encouraging comments on the last post. I read it to Katy and she said, “The focus is on Him as it should be.” Her friendship with her heavenly Father is constant. We’ve been thanking Him out loud throughout the day for Remicade, for pain medication that works, for family and friends who pray without ceasing, and for giving us a future and a hope.

  1. Patricia Says:


  2. Lillian Oliveira Says:

    SO GLAD! you’re beginning to feel a little better, for the time being, Katy. I shared the first part of the Heaven experience at our small prayer group last night, and people were touched by it. Of course I fought tears through most of it. I am so grieved to know the depth of pain that Jesus suffers when He is rejected. I don’t believe the body of Christ in general has thought much about that. Somehow I believe I thought that in His “God-ness” He was protected from that kind of heart pain, after He had suffered so horribly on the cross. But that is what we should have expected - that after he paid SUCH a price to redeem the vilest, that each individual’s rejection would hurt unspeakably.

    Dawn, would you tell us a little bit more about Remicaide and how it helps HPS? Thank you. Prayers with much love, Aunt Lil

  3. Joanne Says:

    Dearest Katy…I am so overwhelmed with the Lord when I read all this…you are in my prayers…Your sister in Christ…Joanne

  4. Curtis Says:

    Hi. I just started Remicade yesterday after a life of CD and two resections. It’s early in the game, but I can tell you this stuff has alrady had a HUGE impact on my body. Two weeks ago I was in the hospital with an abcess, today I was having normal BM like a person who was healthy and fit. Weird, I know. I’m talking instant change. I sure hope it keeps up. For those out there who have yet to try Remicade, I think you might want to consider it.

  5. Beth Sprankle Says:

    Soooooooo glad to hear of some relief. It’s almost Easter! Praying for a blessed Resurrection Day for you!

    Thank you so much for sharing the message that God is writing on your life. Thank you for being His instrument. Thank you for your faithfulness.

    We continue to pray!

    With much love,

  6. Karen Tillman Says:

    Dear Katy,
    I am so glad that everything went well yesterday, as that is what I had prayed for. And I hope that you start feeling better very soon, and that too is what I am pryaing for. Btw. I talked with Karen B. last night. It is the first time that she has been able to focus on something other than herself since Nov. of last year. She had her 9nth surgery since June of last year on Sunday AM, and was in the best spirits I’ve seen in a long time. I know she was feeling better, as one of the first questions she asked was How’s Katy? I had the pleasure of telling her about your success in obtaining the Remicade, and that we just needed to continue praying, and she said that she would. She didn’t even cry as we hung up last night. That to is God at work. Also if by some off chance I am unable to post in the next few days, we are experiencing computer problems. I can’t even access the list serv for HPS or my outlook express account, so I am here and thinking of you all the same. Take care and if I don’t get back with you. Have a Blessed Easter!!
    Love Always
    Karen Tillman

  7. Heather Kirkwood Says:

    Hey Katy! I’m so glad you’re doing better - and look forward to more reports! Grin! I’m actually home from work today with ostomy “issues” - long story. So, that’s why I’m going to keep it short for now - but I just HAD to see how things were going in Virginia! HA!

  8. Doris Harriff Says:

    And you have another church praying for you - Christ Episcopal Church in Springfield, OH (my son-in-law Marlin attends there).
    Aunt Doris

  9. LInda Burk Says:

    HI…what glorious news..a perfect Easter gift……..enjoy the time together …yes good health is a wonderful blessing we all take for granted……it is chilly here..we even had a dusting of snow this morning..who ever heard of snow in April..??? we will celebrate our Easter dinner here with our children and Mr. BUrk..a small crowd this year..looking forward to family time..hugs to all, Linda

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