HEP C lunch at Dixie Crossroads 10/6/07

[susan400]

Okay, everybody.  Who ever is definitely coming, I'm going to make that phone call to Dixie Crossroads on Thurs. Sept. 20th.  Here's the names that have responded to me.  If you need to cancel, or if someone else wants to come, I need to have you reply.  Those of you who are coming, please reply anyway so that I can verify this with you.

Dixie Crossroads
In Titusville/Mims area off of Exit #406, one exit north of Hwy.50 + I-95.   See their web site for better directions.  

Oct. 6th  - Sat. - at 2:00 pm.   Check in with the hostess and tell her that you are meeting with a group of people for MedHPC   (to keep from having to say hepatitis if you aren't comfortable with that).    I figured just saying MedHPC would suffice.

Here's my list:

Amirtracy1  ?
Sparkle Girl & Hubby
Dperry  ?
Florida Mouse & Hubby
SJL - Sandy ?    
Lady Lauri
Seabean & a friend
Pasoperson?
Me

[cbert]

Is Dr. Neslon the main person to see or is there a clinic. I have been trying to figure out how to "make contact". Do they have a clinic for HCV at shands like they do at UM?  I hope to get back to central florida around the first of the year......and of course want to maintain medical care, although at this point i am in a holding pattern after 2 rounds of tx.............hopefully gave my embattled liver a rest.............i still work full time although i can tell i don't have the energy i used to..............Hoping the telprivor will become available at some point, I couldn't get in the UM trials due to the cirhossis............I really do miss the ocala area and am excited about returning "home"

The quality of care at UM is great, but it is massive chaos...........always worry about being lost in the shuffle

[susan400]

Sorry to hear that.    For future reference, to everybody who can't make it this time.....

I can only plan lunch appts. for myself, around the first 10 days of the month.  Anytime after that and my finances are such that I can't promise that I'll be able to plan a lunch.  I get paid, once a month at the beginning of the month.  After all the bills are paid, there's not much left to go around.  If I'm going to plan a lunch, I need to do it right when I'm getting my check.  Just for future reference.  I have to be going out of town around the first part of November, so I can't do it then.  The next available time for me wouldn't be until the first part of Dec.  

Susan

[SJL]

I received my schedule from Shands yesterday and I start on 10/3/07. Not knowing how this is going to affect me, I had better so no to lunch.

I was so looking forward to it & meeting everyone. Hopefully you will all meet again and I will be able to come. Sorry

SJL

[Lady Lauri]

K, we'll go with I am going to Dixie and certainly will if I am doing okay.

cbert, see above :) I am at Shands, got really lucky in the timing of a Phase 3 trial and Dr. Nelson was about as thrilled as me with my news of type 2b and I qualified for trial. This phase 3 trial has already been done for type 1. I've researched albumin interferon (albuferon) pretty well and looks good. Along with better soc, free med's and than 6 more mths. care after tx, it is a very good place. known many to go there, for many reasons and never heard a bad thing on Shands. Soon as I got my diag. I went straight to them and skipped the others. I also live in Ocala. If you want more info. let me know.
Susan...sorry to go off of the thread, but he (she?) asked :)

mouse, be praying for your SVR. THINK SVR! .... "I AM SVR, I AM SVR"
                                                                                     LL

[FloridaMouse]

I was a kidney patient at Shands back in 2000 as a result of a complication  with a hysterectomy.  The care was PHENOMINAL!  If I ever relapse I'll be heading straight to shands for HCV treatment.

Mouse
Genotype 1a, Stage 3, Grade 3
Finished 48 wks of tx on 4/13/07
Hoping for SVR on 9/20/07
(7+ days and counting!)

[cbert]

ay hcv patients at shands here? I am currenlty a patient at UM but am thinking about returning to the ocala area...............but i like the docs at UM and not crazy about changing, although i hear good things about shands. Nonresponde after tx twice, but ready to suit up and go back in, waiting to see how the vertex comes along. thanks.