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NOLA in September?

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Comments

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    Rosemary... My left "hip" breast is 7 weeks post op and still quite firm... and when I asked Dr D about this, he said it could take months and at stage II he does go in there and loosen things up... so fear not... As a matter of fact my left and right "ab" ( 2 weeks post op) breast is only slightly firmer than the left... I had thought they needed to be soft and jiggly BEFORE stage II for him to adjust, but he says no... and my right breast has had so much trauma and is quite bruised... again, they are fine with it... If anyone has Nurse Terry ask her about her breasts... she gave me a look-see and touch and is 3 years out... she looks fab and is feels JUST LIKE the real thing.

    So.. still have 2 drains... so over the drain thing... I have had them 7 weeks today...UGH.

  • KBodie
    KBodie Member Posts: 211
    edited September 2011

    Thanks, jeskachi, this is just the kind of list a planner like me loves! I asked Dr. Sullivan's nurse Celeste about some of these things a couple weeks ago and she said the hospital sends you home with everything you need. Would you say that is not necessarily true then?

  • KBodie
    KBodie Member Posts: 211
    edited September 2011

    Thanks, jeskachi, this is just the kind of list a planner like me loves! I asked Dr. Sullivan's nurse Celeste about some of these things a couple weeks ago and she said the hospital sends you home with everything you need. Would you say that is not necessarily true then?

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    Kbodie... The hospital DOES send you home with everything... but you can't possibly pack enough ABD pads or betadine swab... and I ended up buying some at home to later find out that a quick call to the Center and they will overnight all the extra supplies you need, which is good to know since ABDs and betadine is expensive... Also, once you leave the hospital, you will get your prescriptions, but will need to have your own colace and probiotic since they can't dispense that.. as far as girdles, bras etc, they will give what you need and if you need more, just ask for it.

    I did purchase before going, and took with me, comfy nighties, soft wide waist band yoga shorts, blouses with full waists... I also saved the bag from the pain ball and use it for my drains rather than the drain bag... the drain bag looks so hospital-like.. I only use it to sleep.... AND the first time I went didn't bring slippers, but for trip #2 I wore them non-stop... very glad to have my slippers, nighties and light robe... Of course they supply hospital gowns and a nice robe, but I preferred my own.

  • bennetts1
    bennetts1 Member Posts: 44
    edited September 2011

    Oh Brenda...I loved those camisoles!  I got 2 of those in Charleston after Stage 1 surgery and they are so perfect...hold the drains and are so soft!

  • Del11
    Del11 Member Posts: 398
    edited September 2011

    It never occurred to me to ask the hospital or my dr for supplies, and frankly no one ever offered to send them.  My experience might be a little different since Dr. Massey was my doctor.  If you think you can get everything from the center, then I guess you could save some money.  For me it was a way for me to feel prepared and self-sufficient. 

    Having said that... I do prefer the Marena garments over what the center gives you and they've been just as effective for me (they won't give out Marena because they're not official "medical" garments, or something like that).  The drain vest (which you won't get from the center) is more comfortable than safety pins or other drain solutions.  And the first aid supplies aren't that expensive if you buy online from a medical supply company.  You won't get any bras from the docs other than the surgical bras, which don't last forever and don't have that much support, and the ones I suggested fit our unique needs.  Believe me, I tried many before settling on these bras. I'm hoping others can learn from my mistakes. 

    So... I wouldn't say this stuff is necessary for everyone, but it's been helpful to me through multiple surgeries (and a lot of trial and error) and I thought it might help others.

  • KBodie
    KBodie Member Posts: 211
    edited September 2011

    Thanks, jeskachi, this is just the kind of list a planner like me loves! I asked Dr. Sullivan's nurse Celeste about some of these things a couple weeks ago and she said the hospital sends you home with everything you need. Would you say that is not necessarily true then?

  • KBodie
    KBodie Member Posts: 211
    edited September 2011

    That's exactly the kind of thing I want to know. Just because they say it all is provided doesn't mean it will be exactly what we might need for a small bit of comfort in a very uncomfortable situation. I have been wondering about the camisoles. So NOLA doesn't provide them, just some kind of belt thing? And the bras for after you are home, would you say wait and measure at that time or go with the size you are "supposed" to be after surgery? Because you can't wear them while still wearing drains, correct? I definitely don't want to be hunting around for things when I am laid up.



    And speaking of times with drains, it sounds like a lot of people here have been with drains much longer than I was lead to believe by the clinic. I was told I could resume exercising at a month, such as swimming, biking, aerobics. But none of those things can be done with drains. Since it sounds like one of the worst parts, I better brace for reality. For stage one, how long until you were drain-free? I am having DIEP but imagine it to be similar for flap recon of most kinds. Some appear to be 7-8 weeks??



    Thanks again everyone. I look forward to the times I can get online and see what is happening here.

  • JustLaura
    JustLaura Member Posts: 213
    edited September 2011
    KBodie - Hip drains stay in longer than DIEP drains.  I was very fortunate and had all of my drains removed by day 8 at my post-op appt before I left NOLA to return home. So it is possible - although I think that this is unusual.  I think the norm for DIEP drains is about 2 weeks.
  • djfrro
    djfrro Member Posts: 55
    edited September 2011

    KBodie, I am about 6 weeks out of stage 1 stacked DIEP and I was drain free before I left to come home, they took them out at my post op appointment.  I have had little to no trouble with anything, my "breast" is soft and jiggely the incisions are all healed and starting to fade, I started exercising within 3 weeks of the procedure, walking, then swimming now the occasional run.  I am due to go back for stage 2 the first week of Nov.

  • KBodie
    KBodie Member Posts: 211
    edited September 2011

    That's exactly the kind of thing I want to know. Just because they say it all is provided doesn't mean it will be exactly what we might need for a small bit of comfort in a very uncomfortable situation. I have been wondering about the camisoles. So NOLA doesn't provide them, just some kind of belt thing? And the bras for after you are home, would you say wait and measure at that time or go with the size you are "supposed" to be after surgery? Because you can't wear them while still wearing drains, correct? I definitely don't want to be hunting around for things when I am laid up.



    And speaking of times with drains, it sounds like a lot of people here have been with drains much longer than I was lead to believe by the clinic. I was told I could resume exercising at a month, such as swimming, biking, aerobics. But none of those things can be done with drains. Since it sounds like one of the worst parts, I better brace for reality. For stage one, how long until you were drain-free? I am having DIEP but imagine it to be similar for flap recon of most kinds. Some appear to be 7-8 weeks??



    Thanks again everyone. I look forward to the times I can get online and see what is happening here.

  • KBodie
    KBodie Member Posts: 211
    edited September 2011

    Wow, these are such good things to hear! Thanks!

  • denouement
    denouement Member Posts: 190
    edited September 2011
    Thanks for posting your list Jeskachi - it reminds me that I also did a wish list on Amazon that I meant to send out.  It's more tailored for BRCA+/high risk ladies but it includes pre and post surgery suggestions.  Check it out here:  http://amzn.com/w/2HT5ZMV1PGWPF
  • Del11
    Del11 Member Posts: 398
    edited September 2011

    I had DIEP and I still have one drain. 3 weeks and counting, still over 70 per day.

  • RunningforSanity
    RunningforSanity Member Posts: 101
    edited September 2011

    So this weekend I am having a "Booby Shower," given for me by some great friends.  Everyone is asked to bring a favorite book and DVD to loan for me to read/watch while I am laying around healing up, and anyone who feels utterly compelled to spend money can contribute to a Victoria's Secret gift certificate, as I think I will have to replace all of my bras.  Most of them were on their last legs anyway . . .(the bras, not the friends).  I hope this will be a nice way to channel that powerful female nurturing to carry me through this surgery and recovery.  Did any of you do something like this?

    And thanks much to everyone who has contributed the "what to bring/buy" lists.  Super helpful to those of now getting ready to go.

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    My drains are still in at 7 weeks, but i am unusual... I had 2 surgeries... Hip flap in july and diep flap in Aug due to complications... Kbodie... I say go get whatever will make you most comfortable... I didn't buy camis or the marena or other bras mostly because i didn't want to spend the money and the other stuff is ok, not great, but ok... I would (for me) only have bought it afterward when i knew what i needed... After my first surgery, I had a leaking incision, so the surgical bra was totally adequate as I wouldn't have needed anything else.

    Brenda... The only reason i thought to ask the center was that i was having so many problems and going through a gazillion ABDs a day that I mentioned this, and they offered to send me a bunch, which they did... Also when i had gone to a surgical supply store, they told me doctors are suppose to supply all wound supplies.


    Sonya...sounds like fun.... No, did not do that, but its a very nice sendoff.... I did arrange for all my friends to help me when i got home... Dinners have been delievered which is great cause i can't even lift a pot of boiling water for pasta...


    Kbodie... You should probably buy some stuff and bring comfort clothes with you, but you can always order stuff once home and know what your needs are... Also, each room has a big flat screen tv and a bluray player... They have some dvds but bring your own if you have some.

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    And debbie... I can't believe all the things you can do and have a jiggly breast... We had surgery together in july and my july breast is still quite firm and swollen... Dr D says its ok... And it is a hip breast which i guess takes longer to soften...i also can't reach up high with that arm as my upper rib is still bruised feeling.... Laura says that is where they stitch the flap to the chest wall and it can take 2-3 months for that to go away... Do you have that?

  • Springtime
    Springtime Member Posts: 3,372
    edited September 2011

    Hmmm, taking out all drains before you go home is new. I had very low output and they would not let me remove my stage 2 drains for a while just to "make sure". It was less than 10! Glad to hear this though. The drains are a pain for sure. The quicker you can get them out the better. 

    Some people are realy "juicy" and others are more dry. I happen to be a very dry one, not sure why. I have a friend here at home who also went to NOLA and she kept her hip drains 9 weeks, and then juiced like mad even after they were gone - she was using ABD pads like mad. She then wore a very very very tight compression garment, and things finally dried up. Compression can really help. 

    If you have your surgery in NOLA with Dr. D or S, i know they will send more supplies to you in the mail and smaller compresison garments if you need them. At least, that's what has been reported here by several ladies.  

  • Springtime
    Springtime Member Posts: 3,372
    edited September 2011

    Surgeries next week!!! Go ladies!!

    Sept 13 - Surfagirl - Stage 1 DIEP with Dr. S, NOLA. SCSH. Sept14 - KaitsMom - Stage 2, Dr. D., SCSH, NOLA. 

    Sept 15 - RunningForSanity - Stage 1 PBM with hip flap recon, Dr. Stolier, Dr. D., NOLA. 

  • cider8
    cider8 Member Posts: 472
    edited September 2011

    I did it ladies!  My stage 2 is scheduled for Dec 15 with Dr Sullivan.  Please add it on that loooong schedule, Springtime.  

    Brenda, I like your list.  I think I'll be getting a marena after the first few weeks.  I plan to wear one as long as I can!  At least 6 weeks.  I think I can do it especially since it will be the middle of winter.  

    I never had a booby shower!  I really didn't have anything, as my surgery was to get the cancer out.  I just can't see my friends giving me a booby shower.

    Just this week I went bra shopping for the first time since surgery.  I got two more bras to hold me over until after stage 2.  All this time I've been wearing camis (those 'fat free dressing' ones) or the surgical bras.  The surgical bras were just fine for me all these months.  I'm alllll about comfort these days (but I also am a SAHM, going through chemo to boot).   

  • djfrro
    djfrro Member Posts: 55
    edited September 2011

    Betsy, I really have no discomfort at all, there is some tightness here and there, but I pretty much have full range of motion.  One thing I do notice, which is kinda wierd, when I sleep on my side I usually wake up with my new breast itching all over, I don't know why, but when I go back to my back it stops, I think it has something to do with the blood flow.  my only real complaint is that the new breast is a little larger than the old tram, but I am sure they will address that in stage 2, I am happy that you are at last home, I was telling one of my friends just the other day about all the trouble that you have had.

  • Adey
    Adey Member Posts: 2,413
    edited September 2011

    I'm not alone in December anymore, yay!  (c:

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    About insurance... For my first surgery only... Dr Dellacroce was paid by Aetna... Charged $66,104, and Aetna paid $47,000 as a contracted rate... (my portion is $1800)... then the hospital charged $170,000, Aetna paid $127,000, my portion was zero. I now also see a charge for Dr Sullivan also for $66,100, and that is in progress... again, my portion will be zero... and THEN there is my whole second surgery... poor Aetna.

  • Adey
    Adey Member Posts: 2,413
    edited September 2011

    Interesting!  I have Aetna.  Makes me feel a bit better.  Thanks.  (c:  Have all your surgeries been this year?  Mine will be split (obviously) as my stage 1 is in December.

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    I had my first surgery July 21, second surgery Aug 18, and third surgery Aug 23... and will have a 4th surgery Nov 18... I should add that yes, I have Aetna, but I apparently also have Three Rivers... not sure what they are, but I have them... NOLA told me that they process my claims for Aetna... And the doctors have a contract with Three Rivers, and that is why I paid so little.... and it gets applied to my out of pocket coinsurance which max's out at $3600 per year... so when I had my first surgery, I finished meeting that coinsurance maximum, thus everything else is free.

  • Momma2four
    Momma2four Member Posts: 133
    edited September 2011

    Surgery date added today (unless my skin graft fails)  December 1st!!!  Add me to the list for stacked GAP with Dr. M and Dr. S assisting at St. Charles.  

    Adriene...you are not alone:)  Can't wait to see you!!

    Michelle 

  • Adey
    Adey Member Posts: 2,413
    edited September 2011
    Michelle-  I think your surgery should be on the 5th and then we and our dhs can play the weekend before!Laughing
  • Adey
    Adey Member Posts: 2,413
    edited September 2011

    Thanks bdavis-  I guess Three Rivers is a particular Aetna PPO plan, which I don't have.  So hopefully mine plan will work out too.

  • JustLaura
    JustLaura Member Posts: 213
    edited September 2011

    Springtime - I confirmed today that my Stage 2 (already scheduled above) on Oct 17th is with Dr D if you wouldn't mind adding that. 

    Thanks! 

  • bdavis
    bdavis Member Posts: 3,192
    edited September 2011

    Adey.. I didn't know I had it until Liz Markey told me I did... it is all very confusing for sure. Keep me posted on what they say.

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