Friday, January 07, 2005

Oh Look, Another Loop In The Ride!

Dr Wells called this morning and asked if Dr BC had contacted me yet. I told him no he hadn't and he started telling me that we really need to get this moving because they've got a spot they are holding for me that they can push back some but they are starting to get alot of calls about this study and people who need help. In other words, if this doesn't happen soon I am going to be out of the study is what I think he was trying to say.

I got somewhat upset and couldn't help but think that he was the one who told me to look into going to Duke instead and that I wouldn't need any scans if I went there. Had I known differently I would have went ahead and gone to Tampa to get the scans they scheduled me for last month so that no matter what I could have surgery within the next few weeks. I told him I'm just trying to get this done and over with too and I don't care WHO does it as long as it's done because it's important to me to be in the study. He said he was going to try calling Dr BC again today. I have a feeling this is going to all go to hell in a handbasket.

If anything else happens today I'll update this again.

Afternoon- Dr BC called me a few hours ago and talked to me about the surgery. He said we are going for the adrenal sparing surgery because at my age (this time meaning YOUNG lol)they like to try it as an option. He filled me in on the fact that of course it's a long surgery, there might be problems/complications, they may end up having to take all of both adrenal glands, and so on. I told him I've researched all of this and he's not telling me anything I don't already know. I also told him I'm ready to just get this over with. He was funny because he was sooooo excited that Dr. Wells had contacted him. He says Dr Wells is one of his heroes and he sounded almost giddy. :D

We will be starting me on the alph blocker here in a few days and I will have to take that for the next few weeks. That is the medication that will most likely at some point and time make me pass out if I move too fast. My neighbor, Kaye, has said she will check on Lil Man and I throughout the day to make sure everything is okay so that is one less thing to worry about. I just have to remember not to move too quickly.

Dr. BC said we will do the surgery around the end of the month and someone from scheduling is suppose to call me to set up my surgery date. By the sounds of it, it will be on a Tuesday and they will have me come up on the Monday right before to see the Anesthesiologist to check how I'm doing on the alpha blocker. Then that night I will check into the ICU, Tuesday morning they will start the surgery, I will be out by Tuesday afternoon, and then spend another most likely two days in ICU while my levels adjust. Then we come home and I spend a week recovering before taking off to Duke University for the study.

It's looking like Vinny gets a wife in ICU for his birthday. Just what he wanted I'm sure. LOL.

I emailed Dr. L asking her for copies of the rest of the childrens' blood test results. She emailed me back saying "we are done with the labs for the kids from our standpoint. jl". Well that's nice and all but they have only given ME the results from the genetic testing so from MY standpoint I am still owed calcitonin test results, catholimines, 24 hour urine test results, and everything else. Don't give me this "from our standpoint" crap!! So I informed her that I want copies of all of those. If her nurse doesn't call me here soon I'm calling first thing on Monday and telling them to get copies ready because I'm coming for them. Maybe I just took the way she "said" things wrong. After all, I am on edge right now.

As for the Octreotide scan- Dr. BC says I should get one from an academic standpoint but as far as for this surgery goes I don't need it. He said it won't alter or change anything about the surgery itself. I have MEN2a, I have pheochromocytomas, they are bilateral, they are on both glands. He says all he needs to know. :)

So now I'm just waiting on someone to call me and tell me when to be there for my surgery. Only problem left is to find people to help the first two weeks of the study. Wish me luck!

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