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NOLA in September?

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Comments

  • lastar
    lastar Member Posts: 553
    edited October 2012

    Thanks for the info on the marena garments, ladies! These are persuasive points!

  • GointoCarolina
    GointoCarolina Member Posts: 95
    edited October 2012

    Thanks for the input on recovery .It will help me figure how much to budget for the nurse.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited October 2012

    Got lost here -- what is a DOM?

    My insurance pays for LE garments, mastectomy camis, etc.  I get these through my PT or at a nice mastectomy boutique, and just give my insurance info and they process.

    Are the Marena compression garments only available online, and if so, how do you go about having insurance pay for garments ordered online?

  • celtic_antique
    celtic_antique Member Posts: 351
    edited October 2012

    Pink -- DOM is the nickname that I think Nordy or Spring came up with to describe the black compression garments that the Center provides ... sorta DOMinatrix! LOL!

    I know some folks in urban areas can find Marenas in stores. I live in rural WNY, so I use the Internet. I found that whatever size the calculator chart they have gives you to go down at least one size! Good for the ego, even better for compression. And I did find that as the swelling went down that I had to get a smaller size eventually or I would still have those *(#)!)#&#@)!! drains in! LOL!

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Hey Ladies,

    I have a couple questions about drains and compression.

    I am 3.5 weeks out from Stage 1 and my hip drain output is very low (15 to 17 cc daily). Laura said they may come out Monday. I think may be good news but concerned it could be too early and then need needle aspiration (I think I have this right from reading posts here). I have been walking daily sometimes a couple times a day to prevent stiffness so I feel like I moving around and thought that would increase my output. I have eating healthy and drinking lots of water too. When I take the compression garment off to shower the drain output increases but still low (under 20 cc day).  I thought most hip drains are in about 5-6 weeks.

    1 ) Has anyone had their hip drains out at 3.5 weeks?

    2) Did anyone take off their compressiong garment for a few hours a day and notice more output?

    3) Did anyone buy different compression garment after Stage 1? I have just been using the one the Center gave me.

    4) Are you wearing a garment after coming out of Stage 2? Do they recommend buying a different garment or is it more of an individual preference? I am not having a Stage 2 post op since it would be Christmas Eve so I won't get the chance to ask then.

    Thank you!!

  • jenlee
    jenlee Member Posts: 204
    edited October 2012

    annalive,  regarding compression, I did some research and apparently compression will decrease swelling much more effectively than not using compression.  And from experience, the high-tech Marena fabric does a much better job than Spanx, etc. And MUCH better than the Veronicas, which don't stretch enough to accommodate individual body sizes (big in the knees, loose in the waist, etc.)... I guess since our docs have never worn both kinds of garments, they wouldn't know how very different they are:) !   According to some of the articles I've read, compression is also supposed to heal the areas where the lipo canula was inserted, help contour the body, and help skin shrink.  There are also warnings about compression being too tight.  I do wish the center gave a little more guidance about what they what kind of impression they want and for how long.  Marena also gives discounts to patients of some surgeon's offices, so maybe the center could negotiate a discount for their patients.  http://www.realself.com/question/compression-garment-after-smart-lipo

    I will check for your PM. I don't know how he would have removed the necrotic area if not lowering the scar, but I decided I did want the incision lowered anyway.  The tissue around the necrotic area was protruding out like a tiny little pot belly and felt like it had cardboard inside.  You could actually see that it looked strange if I had on a knit dress or skirt, which I avoided.  Half of me said why bother as I don't care if I can wear a bikini, but I do sometimes wear board shorts or something similar with a halter or bikini top.  On the center's website, all of the women's incisions are hidden by their undies.  I was going to just forget about it, but figured this is my one big chance and didn't want to have any regrets.  My stomach was flat before surgery (ok, not flat, but I could hold it in flat, and it was flat last year before my diagnosis and chemo), so I didn't want to go through all of this and end up with a little belly.  That is supposed to be one of the perks of suffering through cancer, treatment, and all of this major surgery, that we at least get to look a little better.

    ttay, not exactly sure how he lowered the incision.  I sort of didn't want to know.  For some reason, he did cut further around my hips on both sides in order to do it.  Maybe he just sliced me open and pulled the upper tissue down some more?  

    Pinkheart, I'm not sure if my insurance company would pay.  I'm really bad about pursuing that kind of thing.  I think Betsy said hers didn't.  I would think a prescription from your surgeon, submitted with the receipt, would be the way to go.  I guess I should check my policy.  I'm still trying to get motivated to attempt to get reimbursed for my wig that I bought in Dec. of 2011.

    Go Betsy, go!  Do you get to go back to your hotel at night?  I guess they wouldn't make you camp outside in downtown Manhattan.

    Hugs everyone!

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited October 2012

    Dr. D did plication for me twice.  I love the way it pulled in my waistline, but I have had issues with thick bands of scar tissue between my rib cage and my ab incision.  I had a lot of revisions done, and think that is the reason I have the scar tissue.  Last year, I was seeing a functional movement specialist and he was able to break it up a bit, but due to the cost (all out of pocket) I ceased seeing him and I'm still feeling very uncomfortable.  The tightness causes me mobility issues which I especially feel when swimming and when laying down stretched out.  I'm the friend whom Spring mentioned having the cramping issue too, although it finally seems to be waning--two years out from the last surgery.  It lasts for a couple of minutes and the pain is so sharp that it causes me to double over, but I know what triggers it and for the most part, I can avoid it.  I think my biggest caution would be to not have plication if you might possibly gain weight after, or you will surely feel tight and uncomfortable.

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2012

    hello ladies.   Should I buy a compression garment before my surgery or wait for Dr M to suggest one when I get to NOLA?  Leaving in only 1 week.  I almost think that emergency surgery is easier on the the mind at least.  So much to do to get my business and personal affairs in order!!!

    Maggie-2

  • Del11
    Del11 Member Posts: 398
    edited October 2012

    Mags--you'll get 1 or 2 compression garments (Veronique or similar) at NOLA, you can wait til you get home to see if you want something more comfortable to wear instead of those.  Dr. M knows we all love Marenas and most of us wear them at some point, but for some reason the docs don't/won't give those out. 

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2012

    thanks jeskachi.  It is probably a thing where they get the garments free and pass them on.  Companies do that to try to draw in people with their product.  Docs love it cuz it costs them nothing.

    Maggie-2

  • Del11
    Del11 Member Posts: 398
    edited October 2012

    Actually I think it has something to do with some kind of official medical rating.  Like, a rating that Marena is lacking, not one they're falling short on.

  • besa
    besa Member Posts: 289
    edited October 2012

    KerryA- I got rid of my GAP hip drain at exactly 4 weeks.  In terms of stage 2 and needing compression, I guess it depends on what is done but everyone I have talked to ended up with compression.  Many women use the marena compression garment once they get rid of drains but I just used what was given to me by the Center and never purchased anything else.  I don't think there is any recommendation from the Center concerning the need to purchase a different compression garment.  (At least I never heard a recommendation.)  From what everyone says the Marena is more comfortable.

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

    Nordy was the one who coined the term "DOM" for Dominatix outfit (the Veronique!)

    The Marena is very worth it. I did not try to get insurance to cover, never thought of that actually, but I think someone on this list got a perscription and somehow did get it covered. They are suprior, it terms of comfort for sure, and the one I liked is listed at the top up with the Useful Links. 

    Thanks Sandy for sharing you plication story.

    Esmarelda, you know how it is! Soon you'll be on the other side!!! I do remember wait for surgery in the hospital bed all hooked up waiting for stage 2, and I honestly thought to myself, I should just get up and run away! So I think these feelings are totally natural, hang in there. Soon it will be over and you'll be done!

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Esmarelda, Taderbug, and Harmonysun- We will be thinking of you this week.

    Well spoke to early on the drains. After being below 20 cc for almost all of last week, yesterday I was up to 30 cc.  My husband and I went out for dinner and I had a light drink (Pimms Cup- loved that drink in NOLA). I was concerned thinking the drink may dehydrate me and somehow had the opposite affect. Oh well; better to have output increase before they take out the drains.

    Besa- Thank you for sharing your experience. Will see what this next week brings. Next Wednesday is my 4 week mark which seems so crazy! How fast time flies by.

    Look forward to hearing from Bdavis on the Avon Walk and Dana and some of the others who attended the FORCE conference.

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2012

    crap and crap...i think i have cellulitis starting in my arm.....will this delay my surgery that i have waited 4 months for???

    just about ready to cry!!

    Maggie-2

  • celtic_antique
    celtic_antique Member Posts: 351
    edited October 2012

    Maggie-2 -- Don't panic yet!! You know the old saying about a lawyer representing themselves has a fool for a client? Kinda goes for us "rookies" making medical diagnoses. Go get it checked out to find out if it is cellulitis. If not -- GREAT! If it is, the next call is to the Center to ask ...

    You know, for someone with the same name, we also do some of the same things! LOL! I started to panic because I had the beginnings of a UTI -- cranberry juice and a call to my PCP and I am all better and anticipating 11/6 (kinda with dread, I must admit -- not the surgery or the Center or Dr. D. or the staff, but going under anesthesia again ... sigh ...). My scare is that I was working on the infection when my blood work was done so the white cells will be elevated and they may ask for another -- or worse, say the surgery is postponed! AACCKKK!

    Let's "pinky-shake" to try not to panic! A good cry is always in order as a stress-pressure valve, so go ahead and have one of those. I may just join you! :-)

    Maggie-1

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2012

    you got a deal maggie-1 no panic yet

    i had cellulitis a few months ago so know what it looks and acts like so pretty sure...marked the spots and now watching to see how they grow

    maggie-2

  • Jane123
    Jane123 Member Posts: 198
    edited October 2012

    Boy, Mags and Celtic, the Center may have a bunch of free time in early November if you two are acutely ill and my insurance continues to deny authorization. I have waited 8 months for stage 2.  I am going with the flow and jumping through hoops as needed.  I hope it works out as I have made necessary arrangements with family and friends, but we still have not purchased flight tickets.  Ugh.  

    Mags, if we are there at the same time it would be nice to meet.  Celtic, I plan to fly home on the 5th so we may be able to meet as well.   Peace to you all! 

  • Cherrie
    Cherrie Member Posts: 921
    edited October 2012

    Thinking of so many of you in NOLA this week. 3 weeks for me and I will be on the other side. This has been a long wait.



    My hubby and I are in Cape Hatteras celebrating 10 yrs. as a BC survivor. Rest and relaxation before surgery!!!!



    Interesting conversation on compression after stage 2. Sounds like I will need to look into Marena's.



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

    Mags, crap, Can you get on antibiotics ASAP?? Nov 1 is a long time away, get on it right away, can you get IV antibiotics? I think this is what Nordy's doc did when it happened to her....  (SORRY!!! just what you need, right??)

  • MartyJ
    MartyJ Member Posts: 819
    edited October 2012

    HarmonySun, Taderbug and Esmerelda - you will be in my thoughts this week as you move one step closer to the other side!

    Cherrie - congrats on your anniversary!  I hope you are having wonderful weather in Hatteras.

    Maggie 1 & Maggie 2 - whew you two are too much alike in this journey.  Hoping that antibiotics can simply take care of the problem.  I want to see you all in NOLA!

    I am 3 weeks out now, but leaving home in 2.  Voted on Friday.  Another item off my list! 

  • jenlee
    jenlee Member Posts: 204
    edited October 2012

    Kerry (and others who are departing NOLA on holidays/weekends)... just thinking maybe you could request a post op with the doctor on call that day.  My understanding is that the doctor on call still comes in and does rounds, so there is a surgeon or Laura in the hospital on those days.  Don't tell them I'm the one who suggested it:) but it would be a great service to we the patients who are in fact also their "customers."  In some cases, saving us money in airfare and definitely saving us from paying for extra hotel nights.  I remember when I was staying in the hotel after stage one and had swelling issues, my body was swollen like a sumo wrestler!  I had the Dr. on call paged... Dr. Trahan called me back and I asked what time he was doing rounds the next day.  He said he could meet me right away, but I said I'd wait -- he called me when he got in the next morning, we agreed on a time and he had someone at the hospital send a car for us.  Rambling on, but I would think that an appointment could/should be able to be made with the doctors on call and Laura, who rotate when the center is closed.

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2012

    my doc called in the antibiotic and I have started it already.  not sure if I should call DR M tomorrow or wait to see if it is responding to the meds.  Dont want to jinx it for nothing

    Maggie-2

  • KerryA
    KerryA Member Posts: 184
    edited October 2012

    Jenlee- Thanks for the info and suggestion. I literally was thinking about asking about this at pre-op for Stage 2 :)

    Surprised how showering daily has increased my drain output. A bit more work and we end up going through a lot more ABD pads but it seems to be doing the trick. I did happen to notice that the stitch holding my R hip drain is no longer secured to my skin. I am going to call Laura tomorrow but I suspect that means the drain could come out on its own. Guessing the garment will keep in place for now.

    Maggies- Hope you are able to resolve your concerns prior to your departure to NOLA. You have some time on your side.

    Cherrie- So happy for you and your husband. What a great celebration! Enjoy your time away!!

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

    Hi Ladies... I am back from my walk. Thanks for all the rooting and support. I managed to walk 30 miles this year, again my feet were not cooperating, but hey 30 miles is 30 miles. And yes, they do have camping on Randall's Island in NYC, but we stayed at the NY Hilton. Nothing like a hot shower and comfy bed!!

    And I did try to get my insurance company to pay for the Marena, which didn't work out, but I also didn't submit an prescription.

  • ttay
    ttay Member Posts: 83
    edited October 2012

    Congratulations, Betsy!!!!!!

  • Jane123
    Jane123 Member Posts: 198
    edited October 2012

    Way to go, Betsy!

  • MartyJ
    MartyJ Member Posts: 819
    edited October 2012

    Great walk, Betsy!  

  • annalive
    annalive Member Posts: 286
    edited October 2012

    Long walk, Betsy! I walked "all day" at Disney World Epcot on Friday, but it was interspersed with eating and sitting for attractions. Tongue Out Even so, it wiped me out the entire next day. Not ready for serious all day activity, I guess, so will cheer you on -- yay, Betsy.

  • Cherrie
    Cherrie Member Posts: 921
    edited October 2012

    Wow Betsy! That is more than a marathon. You should be proud.



    Maggie-2. Hang in there and heal. Let Dr. M know. The outcome of your surgery is the most important thing. You should be good to go on the antibiotics.

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