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NOLA in September?

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Comments

  • bdavis
    bdavis Member Posts: 3,192
    edited October 2012

    About Marenas... I bought about 4 of them and returned 2... even got them to pay for the return shipping. I kept 2, a medium and a large. I had worn an XL from the Center, so when ordering, talk with them rather than following their sizing guide. Both the large and medium fit.

    My opinion about compression is that it absolutely helps with swelling and fluid retention. My DOM from stage I was too big, and I was not getting enough compression, and had my hip drains for 8.5 weeks... I was very good about wearing compression, and wore the Marena for 6 weeks post stage II. Everything is flat (not lumpy), but I am unsure if compression plays a role... I think I read somewhere that compression helps the tissue heal smoothly, but not sure.

    So today, Vicky from the Center called and said that if I have my elbows and knees lipo'd it will be billed out as cosmetic... Thinking this is odd since he did my knees the last time.. I was just looking for a correction... Plus he needs fat for grafting, so I was coming up with donor sites... I do have plenty though I think in my back hip area. She said all donor sites are fine for revision, so abs, hips etc, but not legs etc. I am waiting to hear back from them, as Dr D told me he doesn't charge for the extra stuff... All very confusing.

  • teddybear71
    teddybear71 Member Posts: 38
    edited October 2012

    I got my last drain out today!!!!!! I was noticing the site around the drain was starting to ooze and bleed. Sent a picture to Celeste @ the Center and she had me come in to have it checked out by Dr Trahan. I was so excited when he said let's take it out. I am in compression for one more week, thinking of moving to Spanx instead of the compression I was sent home with after surgery. I also scheduled my appointment with Vinnie for my nipple tattoo in January. Can't wait, will be DONE!!!!!

  • jenlee
    jenlee Member Posts: 204
    edited October 2012

    Chelle, that is quite a coincidence!

  • Lesleyanne67
    Lesleyanne67 Member Posts: 66
    edited October 2012

    Thanks everyone and especially AmyM. I appreciate all of you being do open you are all so amazing!!!

  • Katiejane
    Katiejane Member Posts: 188
    edited October 2012

       Boy Anita, I hear you loud and clear!  The thought of drains again and compression...UGH!!!!  I am more nervous about this Stage2 than I ever was about Stage1.  Go figure!!!!  Also, I only have 2 more weeks of FMLA w/ job protection.  So if I'm off longer then the 2 weeks I won't be job protected especially if there is a need on my unit.  So chances are I will lose my job and insurance after this surgery.  Good news is we can get insurance through the airline my husband worked for but he went out on medical disability before he was 60 so we must pay the entire monthly premium for medical and dental===$1600/month!  Now isn't that comforting!  Oh well, I need to do what I need to do and hopefully it will all work out.  This entire cancer journey has all fallen into place so hopefully this will too!  Katiejane

  • lastar
    lastar Member Posts: 553
    edited October 2012
    Katiejane, I was getting nervous about Stage 2 until my pre-op appointment.  Seeing all those highly-capable caregivers really put my mind at ease.  Hopefully you won't need more than 2 weeks off, but I'm sure it's hard not to worry about it.  
  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    KatieJane- Thank you for your message. Have you talked with your HR department about an extension to your leave (if needed)? I managed benefits for our company- and work in HR. There are protections that may apply to you under ADA (meaning all companies do not auto term at the end of 12 weeks) and also if someone's leave extends beyond the 12 weeks within a short timeframe (add'l 1-2 weeks) they may make an exception. May differ state but state but just my feedback.

    LAStar- Thanks for your insight. Hope you are healing & feeling better each day:)  Turns out I  have to go through authorization process like I did for Stage 1. Was hoping that wasn't the case but here it is. Since my surgery date is not until December (12/20) they normally don't start on approvals for that month quite yet. Called them today and asked if they would please process since are make our travel arrangements before costs increase with the holidays but more so I want to make sure I can see them for my Stage 2. The thought of waiting again on insurance is getting me a bit more anxious but I figure if they approved Stage 1, Stage 2 should work too right? Venting I know but thought I was over the "hump" with dealing with insurance issues....

  • Springtime
    Springtime Member Posts: 3,372
    edited October 2012

    Chelle, maybe you are all set now, (in the land of Marina!) but another idea I had were Ted hose. Those white tight stocking type things they give you when you fly after a hospital stay. They are meant to compress your legs so you don't get clots. You can google it!

    http://en.wikipedia.org/wiki/Compression_stockings 

  • Nordy
    Nordy Member Posts: 1,106
    edited October 2012

    Hi Everyone! It has been fun catching up on everyone! I am glad surgeries have been going well. And Ann Alive, I am SO happy to hear that your abdominal wound has finally closed! Hurray!

    Well. It is only 10 months later and two appeals including 50 pages of medical journal attachments, but I finally got approval for my testing for possible lymph node transfer! I almost cannot believe it. Of course this is not the end because somehow my insurance stuck a new provision in our plan that limits any type of reconstruction to in network. But I will cross that bridge when it gets here... But thank you to everyone that sent info and positive energy! Something must have worked!

  • Downey30
    Downey30 Member Posts: 199
    edited October 2012

    CONGRATULATIONS NORDY!!!!

  • Nordy
    Nordy Member Posts: 1,106
    edited October 2012

    Thank you Downey!

  • lastar
    lastar Member Posts: 553
    edited October 2012

    Yay, Nordy! Way to go!!!!

  • Jane123
    Jane123 Member Posts: 198
    edited October 2012

    Soooooooo happy, Nordy!   Peace, Tamara

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Nordy- That is great news! Way to go on keeping up the fight. You have been very positive on this board and its encouraging to hear stories like this. Congrats!!

  • PinkHeart
    PinkHeart Member Posts: 271
    edited October 2012

    Huge Congrats to you Nordy on your insurance approval!  I wish you the very best, and thank you because your determination is paving the way for other BC survivors with LE to have the best quality of life possible with this promising surgery.   

    I will be having the LN transfer surgery in December.  Have been counting my blessings over and over and over because my insurance approved it this week after the surgeon's insurance staff submitted a month ago. 

  • besa
    besa Member Posts: 289
    edited October 2012

    Nordy good for you!  Congratulations!  This is wonderful news.

  • Nordy
    Nordy Member Posts: 1,106
    edited October 2012

    Thank you so much everyone. At this point, I have been fighting this for so long that it kind of feels surreal!

  • Katiejane
    Katiejane Member Posts: 188
    edited October 2012

       Nordy,    OMG!!  I had NO idea!!!!!!!!!!!!!!   CONGRATULATIONS!!!!  Wow!!!  Amazing!!!  So what is the next step??  I am soooo excited for you!!  Please keep us all posted!

    Big Hugs!!  katiejane

  • annalive
    annalive Member Posts: 286
    edited October 2012

    Nordy -- Thanks. The abdominal wound was a DIEP detour that took a long time to heal, but it did, and never got infected. Anyone, if you develop this necrosis in the middle of the abdominal incision (probably from being pulled too tightly), don't worry -- it's temporary and will be revised at stage 2. It did help going to the wound care center to have it debrided a few times.

    I've followed your saga for lymph node transfer, Nordy, and I'm so glad you have approval for testing!

    KerryA -- When does insurance get run for stage 2? We'll be there at the same time! Stage 1 billing is still getting sorted out. Anesthesia came through as out-of-network, but should have been in-network for my Aetna plan. Lots of phone calls and waiting.

  • tigsun
    tigsun Member Posts: 162
    edited October 2012

    soccer - sorry for the loss of oyur dog.  i have an 18 year cat that doesnt know she is old so i am hoping for 10 more years with her.

    nordy - congratulations on your victory!!!  long and hard fought but you won!

    i am going to try to pack today for the my trip to orlando.

    For all the stage 2ers.....depending on what you have done......will determine how you feel.  I had very minimal done during stage 2.  a little lipo to the dog ear area...............i told the doctor i didnt want to hurt and just wanted my nipple done.  I was out and walking around no problem because of that.   katie jane you may be able to get back to work in time.  I had concerns about the fmla time off also.  My job was telling me that I was fine and not to worry but I still worried and didn't  want to put it to the test.  I am always saying.....I work because I need benefits.

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    AnnAlive- We will in NOLA at the same time! Sounds like you are feeling better.

    I was told they run insurance about 1 month out. My husband and I discussed making our travel plans for Stage 2 when I came home from Stage 1, so we wouldn't run the risk of paying high airfare around the holidays. We were about to book everything when I thought I should just confirm with Vicky that everything was ok for Stage 2 before I just booked our tickets. To  my surprise she informed me that I would have to go through the authorization process all over again. I had to talk with Jeannine and ask her to "push through" my Stage 2 so Vicky or Candy could send the authorization to my insurance. As of Friday afternoon that had still not been done when I called the Center. Very frustrating. Vicky told me everything should be fine but said it was up to me if we wanted to our tickets now...she did not want to guarantee everything was ok and then have paid for the tickets. I don't think everyone has had this experience. This has just been mine. In some way I'm glad I called to ask but it has caused me some more stress. I'm thinking positive and feel everything will work out but need to be patient and keep reminding myself of it!

  • Jane123
    Jane123 Member Posts: 198
    edited October 2012

    KerryA,  I am in the same situation.  I am to leave for NOLA in 2 1/2 weeks for stage 2 but my insurance co has not yet given approval.  We have not purchased our tickets.  I know Candy is working on this.  My insurance is calling stage 2 "cosmetic".  Well, I agree that getting rid of the bunny tail & dog ears would improve my appearance!  That is the point of stage 2.  I also will be so thankful to get rid of the pulling sensation - like a cramp - near my DIEP incision.  I think I have scar tissue there that I can now feel since I am regaining feeling.  

    Tigsun, Thanks for your information.      

  • bdavis
    bdavis Member Posts: 3,192
    edited October 2012

    I remember before stage I getting nervous about the insurance, but it all worked out, as it did for stage II as well... For my stage IIb they will need to re-authorize in January, but I am confident it will work out... so I bought my ticket. I am flying in and out during Mardi Gras and Super Bowl season, so this week, my ticket was cheap, but pretty sure it won't stay that way. I know Aetna covers what I need done, and I am looking to resolve symmetry and necrosis and some minor lumpiness at the donor site (and indentations here and there)... The only thing I am not sure about is some lipo of my elbows and knees, but if that is not included, then I will bypass that portion.

  • Del11
    Del11 Member Posts: 398
    edited October 2012

    For those people about to have a Stage 1...

    I'm getting rid of my surplus surgery supplies and I'll be glad to send someone a care package (if you chip in 5 bucks for shipping).  I have:

    - about 50 ABD pads

    - 2 boxes of 4x4 gauze pads (soft ones), 50-count each (25 packages w/2 in each)

    - a box of alcohol wipes for stripping drains

    - huge stack of measuring cups for measuring drain output

    - latex gloves (as many as you want, I have a box + extras)

    - a lanyard for hanging drains in the shower

    I also have 2 extra doms in size XL that I wore once, but I'm guessing no one really wants those.

    If you're interested, send me a PM and we'll make arrangements to ship.

    -Brenda 

    P.S. if you have another use for these supplies and can take the whole shebang, just ask. I don't have much space here and I don't want to throw it all away.
  • MartyJ
    MartyJ Member Posts: 819
    edited October 2012

    I think insurance worries us all. From my understanding, they have to wait to obtain insurance approval because they are given specific billing codes that have an expiration date. If they run insurance approval too early, there is a risk that the codes expire before surgery is preformed. This is particularly frustrating for those of us who are trying to book travel and then further complicated by holiday fares.



    And so we wait . . . the frustration complicated because it is yet another thing out of our control.



    Marty

  • bdavis
    bdavis Member Posts: 3,192
    edited October 2012

    Marty... sounds very logical...and yet frustrating as you sit kneading your hands in worry. I think the bottom line is to understand your policy. I have Aetna and can read their documentation as to what is covered. So I feel confident that what I am getting in stage IIb is covered (aside from my two items)... I hope I am not being too trusting, but I know the basics will be covered, and need to get done, so if they by chance draw the line somewhere, I will cross that bridge when I get there... but I think the first step is reading the details of ones policy.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited October 2012

    CONGRATS, Nordy!! I remember when you had had it and was ready to quit and I think we are all so glad for you that you didn't!! Great stamina, girl! I believe that insurance companies just try to wear you down until you throw up your hands -- and you can now, IN CELEBRATION!!

    Betsy, I had the elbow and knee lipo Stage II and I don't think the insurance covered it, but I think that the Center let it ride as everything else was covered. This Stage IIb that I am heading for in November is for symmetry that my insurance company WILL pay for. Dr. D. will do some fat grafting, and if he can't take it from the areas (thighs and hips) where I carry it mostly, don't know what he will do. Apparently has decided on no baby flap for the much smaller natural breast and I haven't had an answer as to what will be done. Gotta put my trust in the man, I guess!

    Got my tickets right after Vicky called to tell me all was jake and that my out-of-pocket this time was a mere $300. I can handle that! I also fly Southwest as they are the one airline that does not charge for a change in tickets -- or first two checked bags, though this stay will be much shorter than before.

    Hang in there all you ladies wrestling with insurance authorizations and all. Somehow, it will all work out. Hope to meet some of you in NOLA around 11/6!

  • chellehump
    chellehump Member Posts: 374
    edited October 2012

    Congrats Nordy!!! So very happy for you!!! Insurance companies are just mind numbing at times. Not sure what is going on with mine. It looks like they denied the claim after my stage II. I received a bill in the mail Friday for the anes. group for $4800. Guess I will be making some phone calls tomorrow.

    Woke up sick this morning :( Just sucks to my already achy body.

    As for the Marena...I got them and it looks like I am in between sizes of a L and M. Not sure what I am going to do at this point as these garments are not cheap. My thighs, waist and knees are still bruised & swollen and I still have some scabs on my incision. Thinking I may send some pics to the center and get their opinion.

    Oh, I do have a Marena stage 2 short leg size XL in nude that I will be happy to send someone for free. It was given to me as a sample (unused). I will be happy to pass it along to someone else.

    Going to lay down and relax for a little bit. Hope everyone is healing well and having a great Sunday!!

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Thanks for everyone's feedback on the insurance side for Stage 2. I hope it works out for all of us! Lots of positive thoughts.

    I remember reading from others about dry, flaking skin from the breasts after Stage 1. Anything to do at that point like a lotion or just part of the process?

  • Springtime
    Springtime Member Posts: 3,372
    edited October 2012

    Congrats Nordy and Ann Alive! Good news all around. 

    Pink Heart, I am very interested to hear how your transfer surgery goes. You too Nordy!

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