Several people commented about second/third opinions, so I thought that I would globally update on that :) I contacted both UNC and Denver. The nurse at UNC is going to talk to the doctors there and see if we can get IR to look at Gess's last procedure. That seems like the most logical first step. The IR folks at UNC are very familiar with CF patients and bleeding and Gess had his first 7 embolizations done there. The doctors rock, the nurse coordinator is AMAZING. UNC is a great clinic!
I also contacted Denver and actually spoke with Dr. Nick (the adult clinic director) about the issue. He didn't seem especially optimistic that they would be able to do anything differently for Gess regarding the bleeding. In fact, he told me that embolizations are really only good as life-saving measures. He said that they could look at Gess's overall treatment plan, etc., but said that it was likely that they would recommend anything different. So...we aren't going to plan a trip to Denver just for a clinic visit at this point. We will probably see the docs there the next time we are in Colorado (Gess's family lives there) just for another set of eyes, but it doesn't sound promising for our immediate concern.
So, right now it is UNC. The nurse should get back to me next week and then we will go from there.
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5 comments:
Small world? Dr. Nick actually mentioned Gess's case to me (not by name) as he and I discussed whether or not I should be embolized....
SMALL WORLD.
I hope UNC can provide you with some more info.
I'm anxious to see how that visit goes for you... I'm thinking that might be my next stop in my quest to determine whether or not to be embolized.
GOOD!!!!!!!!
I hope all goes well and the nurse calls you back at UNC.
Love to you two!!!!!!
I wonder where nutrition plays into all of this. I have not heard a lot about men facing such recurrent bleeding episodes, but I have read A LOT about women. Just a thought, re: Gess' nutritional status.
yay for a start to at least getting to ask more questions and get another perspective. still praying. :)
I'm really hoping that you guys are finally going to get some help here.
Stacey
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