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

[sfbaygirl]

Gosh, I wish I was on your side of the country, sounds so fun!!! Maybe all us CA folks should try this....although knowing how I feel, just getting down the hill is a big deal.  You are great for putting this together!

[dancegirl54]

me too - i wish i was there
how many ma folks are out there i wonder

[Lady Lauri]

Susan, just answered your post on 'nutrition' on other side.
Okay, I want to still do to Dixie ( Ohhhh- I've got a good joke on 'Dixie'  that I can't post :) but I do my 1st tx on sept. 25th and won't know if I am every week or every 2 weeks shots until the day I go in, ( Shands, Albuferon-Riba Phase 3 trial) wether it's albumin Interferon or Pegacys. Do know it's 800mg Riba.....so do you think I will be up to that trip the 1st few weeks of tx.? I guess I am 'in' but can cancel if feeling really crappy? Hopefully I'll be doing great and going to Titusville :)
                                                                Lauri

[Lady Lauri]

P.S. Doing my shots on Tuesdays (as for work schedule) so may be up to it.  

[amirtracy1]

sorry, itchy trigger finger it seems..:)
i will be out of town the first week of October but i will be there in spirit!
i will for SURE catch the next one and if something comes up and i don't take that trip, i will show up and surprise you! great idea.

[susan400]

Lady,

I hope you'll be up for it.  If not, I certainly understand.  When I was on treatment, at lot of times, I wanted to go out to eat with people and then, when I'd go, I'd just order an appetizer or soup, just because I wasn't that hungry, but still wanted to be included.  Other times, I didn't feel up to even going anywhere.  So, whatever you're comfortable with.

Amirtracy1,

Sorry you can't come this time.  We'll have to do it again sometime and then, you can come!

Susan

[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.

[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!)

[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

[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

[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

[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

[Lady Lauri]

cbert, sorry, I work 10-12 hr. days sometimes and don't get online, just saw this.
It's 2:30 AM, really tired and will get all info. for you in AM (later AM). Dr. Nelson is who i'd suggest and I believe it's under "Liver transplant" dept. but I have all the #'s. Will post more in AM.GOTTA sleep now :)

SJL....sound like we are tx-ing at the same place and possibly same trial? Do you have Dr. Nelson? I start the 25th? SCARED sheetless! :{
Will post more in AM.                    Nite all, LL

[susan400]

This is who I have down for coming to the lunch on Oct. 6th at Dixie Crossroads.  Sparkle Girl & Hubby, Florida Mouse and Hubby, Seabean and a friend,  Lady Lauri (if she can make it on her new treatment) and Me

I am waiting to hear from DPerry and possibly Carolyn.  

I will probably call tomorrow to make the reservation.  Please let me know ASAP if you think that your probably NOT going to make it.   I realize that sometimes things happen, but I really want you to be there!  

Susan

[susan400]

Pasoperson/Carolyn is coming, too.  She emailed me this morning.  

Susan

[dperry10]

replied to your webmail.    I plan on being there, just need someone to ride along.  I doubt my Fiance will come, becuz of football.. LOL  but am trying to get a friend , or stepdaughter to go with me.

[susan400]

I wish I knew of someone to pick you up and drive you over!  I know how hard it is to do distance driving.  You get so sleepy.  I have a friend who is driving down from Ocala, but I'm not sure which direction she was going to be taking.  It's Carolyn/Pasoperson.  Have you ever caught one of her posts on here?  She hasn't posted for awhile, but we keep in touch on email.  I hope you can find a friend to ride with.  Too bad you couldn't get your fiance to TiVo the football, or tape it or something.  I've never been a football fanatic myself, but I realize that everybody has their favorites in entertainment.  My husband won't be there either.  He's not into the whole 'social thing' unless it's one of his buddies-then, that's a different thing.  So far, it looks like there will be 2 husband's there and then, us girls.  

Susan

[susan400]

If somebody lives over that way, see if you can get with/Dperry and come on over!

Susan

[Lady Lauri]

I am also driving from Ocala and have no problem giving anyone a ride (if ya ride on the back of my Harley?}) Kidding, doubt I'll be taking that 2 weeks after tx starts!
The only concern is , like SJL, I will be just starting tx and won't know for sure I'll go until a couple days before, as per if I am up to it. The offers there just maybe have a back up plan? (hard planning with this stuff, aye?!)

SJL, we're tx-ing at @ same time and same place, Shands. Would you mind sharing some info. with me?                                                                    LL

[cbert]

hello there, just wanted to check in on how to reach dr. nelson, still can't find him on the web site. I will be moving back to ocala area soon and currently am a patient and University of Miami. I really like my docs. but i don't care much for south florida..........I have been on tx twice, peg and infergen..........still didn't clear but gave my liver a rest............

[susan400]

I'm with you on the South Florida feeling.  This is probably why I haven't been able to bite the bullet and get to see Dr. Schiff.  That and the drive down there.  I am connected in at Mayo.  I may eventually get in to see Dr. Nelson at Gainesville, but I've had not success at getting them to return phone calls or follow-up.  My next step, will be to see if my regular doctor will just contact them for me.  I'm not going to worry about it until probably late fall or after the holidays.  Mostly because I don't really feel like treating and/or being on treatment during the holidays.  I've gotten burned out on treatments and especially since they've never worked on me.   If I do anything, it will probably be some sort of low dose maintenance.

Susan

[nygirl7]

God I wanna come!  I've never even heard of Titusville or I'd figure out some way to stow myself inside somebody's suitcase or something!  WAAAAAAA if there was ANY way I could afford it my friend - know that I would be there.

God I HATE being broke!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Andiamo1]

I am also sorry I am gong to miss it.  We are leaving Ct on the 15th of October and should be in Florida by the 20th.  We are taking a slow drive, since I can't drive for too long these days.

If you ever do it again I will try and come if it is during he winter.  In the meanwhile, we are having dinner with nygirl next week, so we will raise a glass of water to you - LOL.

[nygirl7]

Oh what a loss for everybody who is going that they won't get to meet you and Mafalda!!!

I guess that I am the lucky one after all being broke right up here in CT!!!!!!!!   :)