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NOLA in September?

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  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Yes, there are TV's.......I remember because the lady told us one room was set up a bit different and one bed in that one room didn't have as good a view(of the TV) or something.

    Melanie are you going to play that course preop?  I think you need to!  Cute mindless chick flick= 'confessions of a shopaholic' and another recent fav on lifetime=' drop dead diva'.

    I am now going to look for that episode of Seinfeld.  Melanie I will be coming to find you sunday or monday(9/20 or 21)......My air tickets are held..I'm going to click purchase tommorrow.  I think I get in Sunday afternoon at 130? 

    I think I need to schedule an apt w/ my med onc to see if she thinks a petscan is necessary.  The BS at NOLA left it up to me.

  • melaniew1
    melaniew1 Member Posts: 209
    edited August 2009
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    JenniferJane - Oh we are meeting up, Lets have dinner!!! (somewhere GREAT!).  I have not decided about the golf cause I have not decided on whether I will be flying or driving there.  If we drive, definitely we are golfing!  If we fly, No, cause its too much of a pain to drag the clubs along and I hate to rent clubs!  YES "confessions" is cute, the books are BETTER!  Lets make sure we have our cell numbers handy and all the itineraries straight before we head out.  I will plan to call you prior to your departure to be sure.  SO EXCITED!  Seems so real now.  I went to see my GP yesterday and he was so interested and he has been a BIG help thru all this.  It was great and it made it seem real and it really supported my decision to move forward with this!  xxoo!

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Melanie and Jen, so glad you two have "found" each other !!! I knew someone last time I went and it makes all the difference, you don't feel so "alone" or something!

  • melaniew1
    melaniew1 Member Posts: 209
    edited August 2009
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    Yes it is wonderful to meet up this way.  We ALL know exactly what each of us is going thru.  There is so much comfort in that!  Thanks so much to you Spring for getting this going.  Its amazing what you have accomplished for so many with just the stroke of the key board!  Thanks!

  • happy29
    happy29 Member Posts: 77
    edited August 2009
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    Hi

     Is anyone going to be in Omega hospital late August.? 

    IS anyone else using Dr Allen and Dr Stolier.

    What should I pack? Omega looks nice and I am glad there is a bed for DH.

    Thanks Ladies.

    Joy aka happy29

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Joy, if you give me your specs I will add your date, etc, to the list above.  I  had Dr. Stollier last Dec and he is lovely - struck me as very skilled and also very compassionate. Omega is very nice. Private rooms with murphy beds for a "guest" and private baths. The nurses were very attentive. It was the best hospital / surgical experience I've ever had. It is a small hospital with about 12 rooms I think. You will be treated like a Queen!! Not like going to a big hospital or a university hospital, that is for sure...

    Warrior!!! I just called the center to ask some questions. Katie told me she thought our type of surgery would be 8 hours long. (I am not sure about this, as I thought just a GAP or DIEP was 8 hours long, and we're doing both, but that's what she said!). Dr. Trehan is my second surgeon. We get a pain pump the first night after surgery, so that is a relief, I've never had one, but I'm sure I will appreciate it!  She said at St. Charles Surgical there is no "ICU" and we just stay in our rooms the whole time. She told me because I did not ever have any tummy surgery, she thought I would not need that "scan" procedure the day prior. Somebody named Sally is supposed to call me I guess to give me the low down. Just FYI!!

    Spring.

  • melaniew1
    melaniew1 Member Posts: 209
    edited August 2009
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    Spring  - I think you had asked in an earlier post about whether I would be having DIEP or GAP, I asked for DIEP. I am pretty sure that DIEP will be my best option available but I have not been evaluated in person yet.

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Mel, updated to "probably DIEP" in your specs above!!! :)

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Warrior, I have an update. The initial specs on the stacked DIEP Lumbar were not quite right. A nurse called me back.

    • Surgery is 10 hours, not 8, for the stacked DIEP/lumbar. Starts at 7AM, goes through to 5 they expect. She thought I'd be started out laying down on the belly, and then turned over to finish. She said my second surgeon could be either Dr. Trehan or Dr. Sullivan, it depends on what is going on that day.... (sounds very fluid with the secondary docs floating around helping where needed! ha!). Same deal on no ICU... patient to nurse ration is like an ICU in the whole place, 2 pts, to 1 nurse. Oh GET THIS: Pain medication: We have inserted in us a "pain ball" or something, that stays for like 5 days and auto pumps out local pain med right at the incision sites! Also, we get an IV pain pump, and I think we keep that until the 2nd day. First day we are in bed and all hooked up. So after a full day of surgery, we stay in bed (I assume catheterized!) and it's the 2nd day when we can get up and around. They start unhooking us from stuff. 

    So that's what I know! 

    Spring.

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Oh yeah...sorry girlies! I asked all this stuff and failed miserably on reporting back!  sorry!.  That is correct...foley(urinary catheter for the first day)and that pain ball thingie is called an Onquue....and can I tell you it is one of the greatest things ever invented.......one end is the bulb(filled w/ med) and the other is sort of inside your sugical wound....it emits this slow steady infusion of local anesthesia to numb the area, then we also have the push button PCA(patient controlled analgesia) for the first day.  Ok, I'm kind of afraid to get going w/ any miralax until  can get outta bed.......

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Amen on that Jen, holding off on the mirilax util up and about! :)

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Ok,, I have airline tickets..for me and the BFF now(to and fro)...... guess its really happening!  I bought the insurance too...hope I don't need! still need to finalize the hotel/Hopelodge...........Monday!  Have a great wkend all! xoxo, jennifer

  • happy29
    happy29 Member Posts: 77
    edited August 2009
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    Great news PlainJane!

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Go Jen!!! It's a'happening!

  • thegoodfight
    thegoodfight Member Posts: 124
    edited August 2009
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    I still have not made my decision if I am going to have the double mx, since at this point it is definitely an elective surgery.  Hopefully my appt at Moffitt CC this coming week will clarify things.  My question is if I do decide to go forward and I wanted to check out NOLA, how long does the whole process take from consultation to actually being scheduled for surgery?  Are they booked way in advance?   Just curious.

    Caren

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Hi Caren,

    You don't have to make any big decisions...  I took my time, mine will be elective/prophylactic and I am SOOoo grateful I have taken my time in coming to my own decision and FEELINg  peaceful and good about it....and you know if I change my mind on sept 21 and decide not to go forward I know no one will have a problem w/ it.  Or if they do, it's their problem.

    I think NOLA can accomodate people w/in 2-4 weeks? esp if they have active CA diagnosis.  I've heard lots of positive about them respecting our scheduling needs.

    for ME.......I had my first f/u clean mammo mid may and had decided I wanted to start looking into this(but due to post rads -surg was contraindicated until august-6 mos timeline).  I called AND filled out the online info fri before mem day and had a return phone call from the nurse educator in about a week.  She was very nice, we spoke at length, I had a LOT of questions/concerns, and explained my perfect timeline that would have my surgery coordinated w/ slow times at work and during the remaining 3 wks for this yr FMLA and I'll renew FMLA oct 13th so that I have 12 wks total covered leave intermittently thru the next year.  I wanted a consult too.  It is certainly not required but they were happy to do this and it gave me an extra peace of mind about my decision.  She(nurse educator-Liz) asked if I wanted to schedule a surgery date when we scheduled the consult and told me I was by no means obligated, it was simply a place holder.  I DID schedule it.....because I had seen some scary photos that very day at another PS's office I consulted and was pretty sure I wanted NOLA.  So I got my perfect timeline and all continues to come together nicely.

    That's my experience.  Happy to share more if you need more info.

    Best wishes!

    jennifer

  • thegoodfight
    thegoodfight Member Posts: 124
    edited August 2009
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    Hi Jennifer,

    BTW, Jenn is my first born's name, so I feel a kinship already.  Thanks so much for the info.  As I said, I have not made any decision yet, but I am putting all my ducks in a row, so I have "the directions" handy if I decide to make the trip.

    My visit to Moffitt on Wednesday (if we don't get our first hurricane of the season) should give some clarity.  First on the agenda here is my husband's second knee replacement surgery at the end of September.  This is also not an easy recovery, but I must say I think easier than bmx and reconstruction.  But I need him strong and healthy to travel with me if I am having surgery and of course take care of me after that.   I think this is the "worse" part of the for better or worse deal.  Who knew??

    Again thanks for the info.  I am happy to know that I can get the ball rolling quickly if that is my choice.

    Caren

  • Warrior517
    Warrior517 Member Posts: 240
    edited August 2009
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    Springtime! Wow..good job on all the information!! lol  A pain ball, eh? Sounds great to me! Long surgery ahead. I think I have packed on ten pounds lately with all these summer bbq's. I may just end up w/just a DIEP now..ha ha

    What day do you leave NO? I think I am there just a bit longer than you. We will have to make plans to meet soon!

  • sassie62
    sassie62 Member Posts: 40
    edited August 2009
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    Dear Ladies:

    I am a little anxious and concerned now.  I have been reading through the posts and have found out that most of the woman that are going to NOLA have their Stage 1 and Stage 2 dates before even going for their Stage 1.  Here I am out 2 1/2 months of Stage 1 and no one has called and set a date for my stage 2. 

    Can any one of you comment.  Did you ask to have both dates set up for you at once or did they automaticaly do that for you without asking?????????

    Length of Surgery    You know when Katie or the doctors give you a time for length of surgery it is an average.  I had delayed Bilateral Diep surgery that was supposed to be 6 hours.  I was in surgery for 9 1/2 hours.  No one said that anything went wrong just that sometimes it take longer than expected.  Always wondered though why I was in so long??????????  But I had to go back last week to close my incision.  And all I kept hearing throughout the week was the doctors in surgery and it is taking longer than expected.

    Sassie

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Sassie, I sent you a PM. I asked for both dates (stage 1 and 2) when I got my stage 1 date. I told them I wanted to do it for insurance purposes. I don't think they call you with dates, you have to call them and ask for surgery to be arranged. I typically call and email, I seem to get better results that way.  I have another friend who also is down there now, and she didn't have her stage 2 date either. I guess it varies?? 

    Warrior, I am on vacation! My surgery will be 2 weeks from this Thursday. Trying not to think on it, but I am starting to get to that point where I just want it over!  We leave for NO on Sept 1! How about you? 

  • nativemainer
    nativemainer Member Posts: 7,850
    edited August 2009
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    I, too, got a call back from the educator within a week of sending in my preliminary paperwork.  One of the questions she asked was if I had active cancer now (which I don't, AMEN), then she explained that ladies with active cancer get priority scheduling, for obvious reasons.  Since I'm not planning to have recon until next summer that's not an issue for me.  Stacey did say that they usually get a surgery date within about 3 weeks from the consult (or decision to go if the woman chooses to do the consult/pre-op and surgery all in one trip).  They are very happy to work with me around my work schedule--the time line Stacey gave me was a minimum--AT LEAST 12 weeks between stage 1 and stage 2, but longer is perfectly fine.  The time line I got in the packet indicates that stage 2 planning was initiated during the stage 1 follow up apointment. Sassie--maybe you should call and ask about stage 2 scheduling?  At the least it would give you more peace of mind.  Also, ask why the surgery took longer than expected--you have the right to know, and it will likely turn out to be something very mundane--smaller than average blood vessels needing more time and attention to connect up, or something like that.  Surgery frequently takes longer than the average--statistically any individually surgery has a 50% chance of taking longer than the average, which does not make it any less upsetting.  Ask why your's went long, the doctors will tell you.  Was anyone with you?  The docs probably told them why it went long and you wouldn't necessarily remember hearing that conversation, or you may have been in the recovery room at the time.  You have the right to know, so ask!  The docs won't mind--they're used to those kinds of questions. 

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Sassie-

    I too wanted to get this wrapped up in the same year so once I heard Spring had her date I copied!   I  called and asked, someone got back to me-  I think Celeste (who is currently out on maternity leave) .But  I'm sure someone else can schedule.  Of course- in my mind this is truly all 'tentative and god willing'.......I take nothing forgranted and have many  hoops to jump thru before so if a date gets changed no big deal...and if it all works out according to schedule- even better!  I think she scheduled me about 10 or 11 wks...she said at LEAST 10....I think we had a later week and she went backward-can't remember why but said it would be ok. 

  • Warrior517
    Warrior517 Member Posts: 240
    edited August 2009
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    Springtime...I am coming in on the 2nd in the early evening. My hubby is meeting me on the same day (he works out of state so we only see each other on weekends so this surgery is a treat since we can be together thru it all) lol  I am there until 9/15....a bit longer than you.  Did anyone tell you how long the pre op appt is?? I just wonder so that I can get some time in for sightseeing before surgery.

    I am having my stage 2 in Chicago w/Dr Massey the week of Dec 8th....is that much of a recovery?? I just wonder w/the holdiays so close how recovery will be.....

  • Trishia
    Trishia Member Posts: 361
    edited August 2009
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    Sassie,

    You need to call and ask for sure.  Some women want it done the minute they are able (12 weeks), others prefer to wait.  The Center does not know which of the two you are!  

    Also, I would imagine that the length of time would depend on your body...you said he had so scrape all the fat he could so that you could have a DIEP..so I imagine that would take a little longer.  Also, when dealing with blood vessels, the reattching and harvesting would definitely vary by person.

    Did you ask the Dr. directly? 

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    OK, I have been ever so productive:

    Found out this am that I have authorization!  gulp! 

     Also met my deductible-out of pocket max will be in sept BUT this is great because my PT who did my LE(is out of network). I will see her post-op to start back exercising and getting back into shape guided by her so that will be bargain priced now.

    Also will see my med onc thurs to discuss if a petscan is indicated and see if I need any other specialty appts because of anti-hormone stuff like gyn-wise.

    I'm already arming myself for disapproval on going to NOLA from her since she's from Mayo.  But who knows? maybe she'll surprise me...and guess what-I don't care if she approves of MY decision or not.  So there! 

  • OG56
    OG56 Member Posts: 377
    edited August 2009
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    I just wanted to tell you I had onque or pain ball after a colon resection and it was the best thing since chocolate! It really made the incisional pain null and void. Good luck and a speedy recovery to all of you!

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Thanks Linda, are you rescheduled for sept or still waiting on another consult?

  • plainjane64
    plainjane64 Member Posts: 521
    edited August 2009
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    Linda...I was curous so read your other posts....EEKS!  Praying for good results....EEKS! 2  MRI guided biopsies!  one was the most painful experience I've ever had......but that's how mine was diagosed!....Then again, I've never had a root canal or experienced chidbirth............

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009
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    Linda, thanks for the positive on the Onque ball!!! very good. Glad to hear it. !!! Can't wait to get this over with.... :)

    Warrior, I will add you above in terms of your Stage 2....I think the surgery will be at least 5 hours for us (given both front and back!) and about a month's recovery. We get drainage tubes in the butt again! ugh.

  • OG56
    OG56 Member Posts: 377
    edited August 2009
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    ((Jane))

    I have to tell you I was one big cry baby over having 2 MRI guided biopsy's in one week. My diagnosis and what I should do as treatment is so unclear it has made me postpone my BMX. I am going for 2 excisional biopsy's on the same day (both boobs) and if there is no cancer found I will probably do my BMX after the first of the year.

    ((Springtime)) I need an Onque ball for my whole body and brain right now LOL

    Wrapping you all up in prayers and positive thoughts!