NOLA in September?
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kaitsmom -- Zea is one of my absolute favs. Also Houstons is fairly close and great food there. If eating in the evening, there is usually a small live jazz combo -- quiet, not the threshhold of pain, so you can eat and chat ...
Hang in there Bettye ... there are many possibilities to explore and one or more of them have to come through for you!
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ZEA!!!! When I go to Fairway, we stay at a hotel in walking distance to Zea's in Covington. We'll eat there every night. Ribs & cheese grits!! Big salads!! Decent wine!!
Next week I'm going to NOLA for FUN, not surgery! Can't wait to prowl the Quarter, drink fab coffee, eat at amazing places that look like little dumps...
Needs2New--where are you going to be staying after surgery?
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I found this cartoon and gave it a little "revision surgery." Enjoy!
I have to say though, as my date approaches I'm getting more anxious. I've been weepy for the first time in weeks. I still feel like I'm doing the right thing, but my poor nipples are so innocent. They still perk up like happy puppies who don't know they're going to the vet to be altered. I can't imagine what it will be like not to have that sensation - which has always been a big deal for us. The clock is ticking and I'm worried.
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Oh, those cheese grits! And the salad with their pepper jelly vinegarette! And their tomato basil soup! Their roasted chicken! yummmm
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Anne - staying @ the Claron boutique the 2 nights before surgery and the Homewood Suites after. Hard to believe I leave tomorrow morning. Trying to remember all my stuff to take. My girls have a birthday party today so that will help keep me busy.
Kaitsmom - will try Zea thank you.
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LOVE IT, Eva!!!
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Zea is hands down one of my favorite! Their fresh fish with ettouffe is delish!
Walking from the Clarion to the center should not be an issue. They are both there right on St. Charles Ave & is only a few blocks away.
Kaitsmom & Need2new... I may need your help! And Minnesota too! My hubby works in a hospital that self funds their own insurance plan, then has a third party for all the pre auth stuff. They LOVE to deny everything. Last year they flat out denied my friend breast reconstruction AT ALL unless she did implants or tram & stayed local. And we have out of network benefits! I honestly do not know how I ever got my reconstruction put through. Maybe because I jumped through all the hoops they put in front of me, or maybe I just got that ONE sympathetic ear on the phone just that one time, or maybe it was because I had a BC survivor that worked in HR that advocated for me. I don't know how it happened, but somehow it did. Now I have to gather a ton of ammunition just to have the lymphiscintography done just as a preliminary to surgery & they have already denied me twice. That means this is my last shot at appeals until next January. Which means another year of LE & maybe another round of cellulitis... Been living with this sh*t for 6 years now and mentally, I am exhausted. Anyway, sorry, i didn't mean to unload! But any help would be greatly appreciated!
Eva, mourning the loss of your breasts is okay! You have had them with you for sooooo long, and now you are getting ready to say goodbye. It is absolutely okay for you to be emotional about it! Take some time out & have a good cry whenever you need to. We are all here to give you support and send hundreds of cyber hugs your way. ((((((((()))))))))) Hang in there.0 -
Super cute cartoon Eva!
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Nordy,
I am in the exacy same position. The 3rd party administartor is supposed to deny and really has no no authority to approve. Go directly to the hospital HR department and find the person that deals with Insurance. I had a letter written by the doctor as to why I needed the procedure and then I also wrote a letter stating this was not a procedure done at my hospital. They immediately approved it.
I am "out of network" for my NOLA visit and when I went to Sloan in NYC for my liver abalation but had it all covered at the "in network" amount of 80% since they were procedures (a) not done at my hospital and (b) current standard of treatment for my condition.
Honestly the key is the person at the hospital who either sits on the review board of claims or has the relationship with the 3rd party to push them through. SHe actually sent me the email trial of being sure that all claims from these facilites and doctord were to be paid at the in network.
I think I need to get a new job as a patient advocate and stop working in the operating room
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For those of you that have had DIEP, how many of you did nipple sparing? What are the advantages? You do not have the same sensation, correct? Can they shrivel up? For some reason (perhaps I read it somewhere) I thought that was a potential outcome.
I too am worried about losing sensation in that area. I'm worried about the whole procedure and how I will feel afterwards.
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Neede2, i have tried going to HR! And so did my friend. They told her, "Whatever CUP decides is what we go by." and they told me the same thing when they denied my revisions last year. The lady that helped me the first time has since retired.
. But you know, I am going to try my hardest!0 -
Caitlin, from everything I've read and heard, you will lose nipple sensation regardless of what type of surgery you have. Most of the nerves go through the breast tissue and are cut. I've talked to a few women who have had some sensation return, but I'd love to hear someone say they had erotic sensation return. It's making me so sad. Breast sensation is not a side dish here, it's much closer to a main course and I don't even know what sex will be like without it. :-(
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Caitlin... I had one NS and one not... I have no sensation in the spared nipple.. My one concern was that if I spare one and not the other, that they would match... I have not had tattoos yet, so I can't say whether they match or not... but they are very close. The NS nipple does not change in size either... It is slightly protruded, and that's where it stays... does not get erect. So if its going to stay in one position, I guess its a good one.. If I were to do it over again, I might just have them both taken so they match perfectly.
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Djweinstein - That's a good idea. I will have to try that, but won't I have drains on both sides?
I have thought about getting maternity shirts too since they are bigger at the bottom. But, how much room do you need at the top to accomodate the breast drains? I ordered a few pair of pants online, but I am not sure how they will fit. I have been told that Yoga pants fit tightly around your thighs and you don't want that due to the compression garmet showing through.
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Chellehump... The drains all have kind of long hoses and can all fit in one bag (even on the hip), so the left hip drain can go up over the top of the girdle and then swoop down to the right hip to go in a bag...
As for Yoga Pants, I bought really loose pants, more like lounge pants. I bought mine at Target for $15 Gillian and O'Malley brand in the department that sells yoga pants. They are super soft and have a wide waistband and very loose legs... Not the kind of yoga pants you would buy for exercise. I have them in pant length and also knee length (my first surgery was in July)... They are very comfy over the girdle.
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chellehump- The breast drain tubing starts higher but the "bulb" part of the drain can be stored at the same level as the hip drains. You need room at the bottom of the shirt (stomach area) not the top. The only clothing I purchased were two pairs of draw string jogging or sweat type pants (sort of the same as sweat pants but made of looser material) and a loose button down top.. The pants came from Sports Authority. For the pants I didn't want anything too tight around the waste or hips - because of the compression garment and because I don't think it would be comfortable because of the incisions. ). If you use the type of drain holder that fits outside your shirt I guess you would have more options in terms of tops but I didn't think about doing that.
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Nordy, since the hospital is self-funded, anyone and everyone in a position of authority at the hospital may be of help. Including those who sit on the Board of Directors! HR doesn't make the policy decisions, the boards do, and HR oversees their implementation and deals with benefits etc. (Well, I'm sure you know all this). But the Board of Directors may be of some help if you feel you could write a letter to them as well as any executives - CEO, CFO, etc. I would try to put pressure on anyone that you can . . . I will be in England for the next 4-5 weeks, but will still check in on everyone here every couple/few days, and if there is anything I can do, or advice I can give you, please feel free to ask, on here or through PM.
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Amy... lucky you....
Nordy... sorry for the insurance crap... I just hate it when people make decisions regarding things they have little knowledge of.
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Amy, thank you. You know, the hospital merged with another one this past year. So far they have not merged insurance benefits, but our next door neighbor's mom was the real estate agent for the ceo of the larger hospital that has come in to merge with the one my hubby works for. I had asked her before if she would forward an email or regular letter to him if I was still having issues with getting things approved & she said that she would. She also said that the ceo is a really nice guy.... So maybe I will have to do that even though technically at this point my insurance is not under the bigger hospital yet. I just think it reflects so poorly on the hospital... They sell themselves as being so progressive & having this nice breast cancer center, yet they are denying their own employees reconstruction... A federally mandated surgery at that. Grrrrrr!
Betsy - thank you.0 -
Nordy - you just wrote your own letter. I actually also used those words before. You can do it, just be sure, as I am sure you know, Keep copies of everything, times, names and send registered or hand deliver. Kaitsmom knows the inside track and that will be helpful.
Off to NOLA in the am, going from frigid 30's to the balmy, 60's. Sure I packed too much and not enough. My girls were sad tonight. I hate this stuff.
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Nordy: You go girl! Keep on growling and pursuing your insurance. I'll keep praying for you.
Need2New: Enjoy the weather in New Orleans and the awesome food. BTW I happened to glance at your diagnosis. When did you have Hodgkins Lymphoma? I had it approximately 20 years ago with radiation therapy then breast cancer 4 years ago.
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Eva and Caitlin,
About nipple sparing. I would do it if at all possible. I did it on one side. The areola still relaxes and contracts, looks real cause it is real. Less sensation for sure. The other side Dr. Stollier did not recommend, but he would have done nipple sparing if i insisted. I wish now that I had insisted! Many women get both reconstructed, but I'd opt to keep both spared if you possibly can.
My recon side deos not relax and expand as much, especially after the nipple was rebuilt because they use the areola tissue to do it. Also, not as much pop on this side.
So, just sharing my thoughts!
Nordy, thinking of you and your insurance woes.
Go Need2New!!
Jan 19 - Need2New - Stage 1 - NSSBMX w/ GAP flaps.
F
Eva, LOVE the CARTOON!!! Did you create it???
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Karen--I'm going to be at the Embassy Suites at the Convention Center Sunday night through Thursday. I'll keep in touch with you via this thread, and PM you about how you're feeling, etc, in hopes that I can come say hi, or meet you if you happen to be up to moving about The Quarter.
PM me here any time and I'll give you my cell number, too. Best of luck. Frigid 30 degrees? That's balmy to me, as I woke up to 12 degrees outside this a.m. and 59 in the house!!!!
Nordy, I cannot believe the crap you're going through. If it pisses me off this much, I can only imagine how you're feeling. To have your needs ignored, denied. "Cellulitis? Oh, you can take antibiotics for that. We already pay for your sleeves. this other stuff is investigational."
Off to work. I'd rather stay home and do Pilates. Oh well. Gotta pay for my habit.
EVA--priceless cartoon!! Send it to them!!
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I didn't create the cartoon. The original said "Photoshop?" I just changed it. I never thought of sending it to them. They'd probably get a kick out of it.
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Eva- Keep 'em coming! (c: Thanks.
Well, I still have drains for two more weeks (unless the output changes) or should I say only two more weeks. (c: I do look forward being free of them. January 31 is marked on the calendar, that's eight weeks out from stage one. Stage two is 3/15. Can't wait!
Insurance. Phssst. I know they beat me down. Good luck to all that are fighting that fight. I'll be back in it soon with stage two coming up.
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Thank you Betsy and Besa!!
It is hard to picture this stuff in your head. I will look for those brands and hopefully find some here in Atlanta. I will be there in the beginning of June, so it may be a bit warm then. I know it'll be warm here too when I get home.
@ Karen, Sending hugs and prayers your way!!
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Question: I am 13 weeks post Stage 2. I have issues with my stomach above my incision STILL being swollen although not as much as it has been. I think it is going in the right direction and is a little bit less each day. I haven't been in compression since week 11. I have up'd my activity to try to get that belly swelling down as well as to get my fitness level back. I started doing Tae Bo 3 weeks ago and I don't have a problem with that. Most of the moves are doable. However in my Pilates class I find that I just can't do everything yet. Is this normal? Have others taken this friggin long to get back in shape?? Am I just a slow SLOW healer? I can do crunches (both straight and side) and a plank however I can't do a V sit or anything that takes me from laying flat (which I can still feel pulling - but it is manageable) to my back being off the floor. It is like hitting a wall. My body just won't go. Anyone else experience thsi? What level of fitness are you back to?
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Laura, do you do Pilates with a trainer or just a class or DVD? You may benefit from some private lessons with a trainer who has a tower unit or cadillac, because it can get you into that "V" (teaser) so easily since it uses a spring assistance. Then you can gradually get the feel for doing it against gravity. Be patient, and it WILL come! Little things like swelling can irritate the deeper muscles to the point that they just shut down. Got to retrain them slowly. Lots of modifications you can do in the meantime. PM me if you need some Pilates assistance!
Seems to me that I had a "dead butt" for a while after SGAP, and it's firing fine now.
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Have a question for those experienced with DOMs. I finished Stage 2 and am at the week 4 juncture. I want to go from the "zip and grip" garment to the Marena pull-ups (sounds like baby diapers, LOL!). At any rate, though the current garment is fitted, as I have lost weight and the swelling has gone down, it is no longer snug. How snug are these supposed to be to be effective? I ordered the same size in the Marena, but am now wondering if I should go to a smaller size even though the Marena calculator shows me right on the cusp for sizes. And, yes, I am reallt OCD about the compression garment. If Dr. D. says 2 weeks is marginal, 4 weeks is better and 6 weeks is best, this kid will head for the "gold standard"! Oh, and I have lost another 15 pounds, Too. Thoughts?
@Laura -- Didn't have DIEP so can't speak to that, but did have a full tummy tuck a few years ago (why no DIEP) and I know that it took me nearly forever to do some ab works. In the interim, I did that which I could successfully, added more reps, and worked VERY hard on cardio and other lifting for muscle building after the decline from surgery. Took months! I am a different build from you, I think (classic pear here), so that also may make a difference. It isn't slow -- we are just impatient! :-)
To all those wrestling with insurance: Don't let the bast***ds get you down. It is a "game" of Mexican standoff and the purpose of the insurance company is to wear you down into submission and giving up. DON'T DO IT!!! I'd get a lawyer if their refusal violates the Federal law! I am somewhat lucky in that it was determined that I was mostly covered, but I know the Center is fighting hard for every doggoned nickel -- and I pay platinum premiums for my coverage. The ONE time you need it and they dig in their heels with every excuse and condition in the book they can find and make up. HANG IN THERE!!! Like AnneW, it makes me so mad I could literally punch someone!! FWIW ...
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I am heading down to NOLA tomorrow for DIEP to fix the right flap. Please, please pray and hope and send good vibes my way! I am nervous, my kids are so sad and crying that I am leaving again for 10 days. If Dr. D can get the right to be as good as the left, I will be a happy camper! Will anyone else be there this week? VickyB
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