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Tuesday, May 29th ( 11:30PM)

May 30, 2007 /

Got a brief update from Mom tonight…

First she wants me to make sure everyone knows that the reason she hasn’t put a post on is because she couldn’t figure out how to get on the Admin page from my laptop! Likely excuse 🙂

No answer on the DNA cell info yet.. hoping this will be soon, since we were expecting it last week. They are going to do a CT scan on her stomache to see what’s going on there.. According to Mom, her stomache is distended and she hasn’t been eating much in the last few days. They want to check this out, and if that doesn’t show anything they may consider that Liver Biopsy they were talking about months and months ago… all this could be signs of GVHD.

I’m sure one of the reasons she is finally the perfect blood type ( mine!) is that they had taken her off the Prograf and were trying to speed the immune system along.. but that could cause GVHD, so they need to be very careful to watch for that.

I know I have to be careful what I say, since I am aware that some of the Henry Ford staff check this page often. The staff at HF is awesome, and they have become a part of our family in some ways, but I am getting tired of hearing they are going to biopsy this, or biopsy that, then they change their mind.. then change it again.. and then after all is said and done the answer is always “There’s something going on and we need to figure out what it is.” Medical Science is not perfect.. and Kerrie has been a challenge from Day 1.. but I’m getting tired of all the talk about what they are going to do… it’s time to start doing it ( Mom’s going to kill me for this one…)

and to any HF Staff that reads this… please don’t take offense. Just a frustrated sister wishing we could get some answers.

Jenn

6 Comments

  • Joan

    May 30, 2007 at 2:18 pm

    Yes Jenn,
    I’ll kill ya………not really.:)
    But I do understand why they say they may do this or that and then don’t. First, they do not want to put Ker thru any testing that is not necessary, especially one that could include something like a biopsy. It would be hard on her and continue to drive up costs unnecessarily (not the primary concern, but still an important one).And remember, Ker is not following the textbook during all this. They call her their mystery patient. Is it this or is it that? And the tests that are done are so often inconclusive. She is not a candidate for surgery (last resort only) like they might do on someone in other circumstances.And I think that the staff wants answers too.

    So we’re just going to have to live with this for the time being.
    Love Ya
    Mom