A blog for the family and friends of Kim Gillespie regarding her medical trials and tribulations associated with the genetic disease Von Hippel-Lindau (VHL).
Wednesday, March 11, 2009
Still waiting for a YES
Today my eye Dr. tried to contact the eye Dr. at NIH for a more in-depth reason for my denial for the clinical trial. He hopes to get more answers and find out how great a risk I really am for a brain hemorrhage {a percentage risk}. I'm also trying to find out if stem cell research will be of any use for my eye problems. I am still currently awaiting the progress notes from all the consults, as well as discs of my scans, so that I will have a better understanding as to why I was rejected. They should arrive Friday or Saturday. I am still finding myself very frustrated without the answers and have no contact numbers of the physicians who made the decision. As far as I am concerned, it is not a done deal yet until I speak with a neurosurgeon for a more detailed explanation. In the meantime, I have decided to focus on eating better and maybe trying some alternative therapies. Once I get more answers from NIH, I will begin looking at more clinical trials that may be available internationally. Stay tuned...
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4 comments:
Gee, Kim! This blog is a great idea!!! And who took that beautiful photo of your family? LOL
Hey Kim,
This is a great idea! It has to be exhausting to keep up with all the correspondence. And...I would like to add how CUTE your page looks!!! Much like your Christmas cards :0)
Hi Kim,
You're amazing - keep up the good cheer....What a beautiful family.
Kim,
Please keep in mind that I have cord blood banked and would love for you to be able to use it, if it will work in any way!
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