NOLA in September?
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Im Home!
Our Layover flight was delayed. No surprise. But it sucked. Got home 11.5 hrs after we left the hotel.
I will try to post more later. Im beat & in alot of pain.
Gonna catch up on pm.
dbdaze The Dom (dominatrix as Nordy named it) outfit is the Girdle they sometimes have you wear after stage 2.
Gin sorry I missed you. We got kicked out of the hotel earlier then we had hoped.
Did get to stop by & see Journey again before we left. She was looking & doing great for day 2!
Still not peeing much. Having a hard time going. I have alot of edema. my Knees are huge..as is the rest of my legs.
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Nordy - it swells and I don't feel like it ever goes completely away. I see a LE/PT once a week right now, but I could go a month and be ok, it's just in an odd spot my upper arm and kind of under arm towards the back. Hard to massage on myself there. I've been seeing her for a year and she's never recommended a sleeve. I've flown to NOLA once and she showed me how to wrap it, so we wrapped it really good for going to and from NOLA, it did just fine. I just wondered at what point do you say I need a sleeve. I mean if that's what it will take, but it just feels like am I going to have to do this PT forever? It's really not horrible but mildy annoying if that makes sense?
dbdaze:
Well let me know your room # or something if you're up for visitors. We're in the center at 3:30 on the 17th for my pre-op so I could come by then, or after my surgery on the 18th. I did send you a pm with my cell #, did you get it? Can't wait to meet you, it sure makes it easier knowing someone else that will be there too! I totally get the desire to be in the French Quarter or in a nice hotel, but it's not in my budget either. So maybe another time! I'm just thankful to be going.0 -
Dragonfly - if you have LE, you will always have LE, and you will always need to take precautions so it does not worsen. You will need to have a sleeve and gauntlet as a minimum. While you may be fortunate not to need to wear every day, there are times we flare and we need to have an option immediately. If you do your own systematic lymph massage twice daily, you can wean off the PT and only go in when you have a concern. We can carry up to about 30% extra fluid in our arms without it measuring bigger, so if you ARE measuring and seeing areas, you do want to be proactive about this. If lymphedema is not cared for, it creates damage to the tiny lymph vessels, which them makes them less effective, which then causes more swelling - a cycle we can minimize.
You can get to the back of your arm with a towel or a clean 6" paint roller (standing or lying down)
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oh I know it won't go away, I'm sadly aware of that. I was just trying to understand why she's never had me fitted for a sleeve, a year later. Now that I'm running out of insurance I'm nervous!
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DB Daze, I will be at Hope Lodge from 11/8 to 11/15, maybe I will run into you on the 15th.
For those of you who have had plication, Did it help strengthen your back? My ortho dr said that I should go ahead and do it because he thinks it will help
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Yay Dejaboo! You're home!
Daze - Re: uni or bi - I started out with a unilateral in '06. I believed, at the time, that my risk of cancer in the other side was miniscule, given the type of cancer I thought I had. The idea of having both sides removed was never presented to me, and if it had been, I probably would have run screaming into the night! I was about at the limit of what I could handle.
I had delayed recon, and the results were fantastic, and the NOLA docs matched my remaining side very, very well. I don't like hearing ladies say they are having bilateral just so the two sides will match, because matching really is not an issue with surgeons like we have in New Orleans. Having one breast that still had good nipple sensation and that was my "original" really helped me deal with the whole experience, and I was glad I had "her."
Some time after the recon, I finally recovered my emotional strength enough to actually request and read my pathology report and found out that the diagnosis I thought I had, and which my onc kept calling my cancer, said something else all together. So I began to research what kind of cancer I actually had and found out that the risk to my other breast was quite high and my cancer very rare and if I got it in the other breast, it would be hard to detect (as it was in my first breast) and potentially quite deadly. It was hard to find info about the cancer, and I spent a year researching it and talking with other ladies on bc.org who had this diagnosis. We pooled our info from all over the country - what little there was.
Anyway, after much soul-searching and stressing, I made the decision to have the other side "re-stuffed" by our great docs. That's really all it was, too. Skin and nipple-sparing. S-GAP. Thru the whole ordeal of indecision, the one bright spot was that I knew I'd have recon in New Orleans, should I choose another mastectomy, and that the results would be awesome. That's huge!
As others have said, the decision is highly personal and we each come to it from different places and circumstances. Once your make your decision and can move ahead with it, a huge weight is lifted from your shoulders. When I woke up from my surgery the second time, I looked down at my new "girl," and thought, "What was all the fuss about?! All the torture I put myself through?" At that moment, I definitely knew I made the right decision. What a relief to know I've done everything I can possibly do to prevent that cancer monster from darkening my door again.
Good luck to you and whatever decision you make, tho it sounds like you've already made yours.
Eve
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Sheridan - YOU have to strengthen your back. However, what plication will do is reverse the laxity that is in your abdominals. What happens when our abdominals weaken/get lax is that it causes the back to tighten a bit in an extended position (think sway back). This causes an imbalance in the posterior and anterior muscles of the trunk - your "core". With this imbalance comes a host of issues and potential injury. SO, it certainly could help with back issues by decreasing the amount of lordosis (sway back) in your lumbar spine - but not will not "strengthen" your back. Does that make sense?
PJ - Did you think I was training at altitude? LOL - I guess if 75 feet above sea level is training at altitude! The "mountains" around here are volcanos, so they are huge because everything else is down low! Silly! We were higher up (somewhere around 3500 feet) when we lived in Lubbock!
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I read on here the other day about the flap and hair? I have little tiny blonde hairs on my new breasts from the DIEP, what do you do about that? Sounds so strange huh? lol
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Hello,
I am also from Washington state. My surgery stage 1 is scheduled for Dec. 14. Also with Dr. Sullivan. Heard many good things about NOLA. I understand the transportation provided by NOLA is for between the airport and the hospital and the Hope Lodge. Any other transportation needs we need to find ourselves. I believe I will take a taxi, as I heard through the posts here, the parking is very expensive. I was told the HOPE lodge does not like food in rooms. I hope the Hope lodge has a common eating area, I didn't think to ask. Usually, when I travel I find a local grocery store and buy a few things that are easy to snack on.
As far as clothes go, I was thinking of taking my running pants or sweat pants with elastic waist band. Also, sweat shirt with pockets with zip up front. I heard these pockets are good for the drains (haven't figured that one out yet). As far as shirts go, that could be more difficult. Might have to buy a zip up the front shirt or button up. Might be hard to put arms in a shirt that needs to be put on over the head, right? Also, heard on this forum about getting a sport bra that snaps in the front. Just yesterday I was able to purchase a couple of these sport bras at Walmart ($10 for two).
Would love to hear from you. PM any time to let me know how you are doing.
Laurie from Washington (Kent to be exact)
PM me whenever you want. Aren't you glad your getting this over with?
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I have a "butt" boob and a "belly" boob. The butt boob is very white and non hairy and the belly boob is tanned and a little hairy. The butt boob is 15 days old and the belly boob is 10 days old. It's going to be interesting to see how they both develop. I have heard that laser is an option for "hairy" boobs and that it's good to do it after stage 2 and before tatts.
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Dragonfly - generally insurance companies do not pay for any of our lymphedema equipment, sadly. You can try to get them to do it, but so far I've had no luck.
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Kcshreve - Really, wth is up with that? I need to find out if they do, I know my friend has Kaiser and they cover so much a year or so many wraps and things.
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Dragonfly - My ins co is BCBS of FL. I have never tried submitting for my sleeves but they do pay a % of each of my massages. I bought a sleeve online thru Limphedivas and figured I would rather them pay for my treatments which can be up to once a week. If you go to a medical supply store I think you can get a % of equipment paid but you would probably have to submit yourself since you are under 65. I believe they do everything for you once you are over that age.
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Any help would be amazing. Apparently, the law requires that they cover breast recon surgeries, but not the followup materials. There was an attempt to get something passed which would put the pressure on the insurance companies, but it started to die late summer. At least we've got some people trying on our behalf. Coverage is based on coding, and LE gear is coded in such a way that it seems unnecessary, something like "MISC", so most insurances deny coverage. This is what I've been told over on the Lymphedema site. It seems like there was one person who managed to pressure her insurance company into covering it, but I don't know how she did it. Have you visited over there?
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Dragon, I have LE on the side of my chest, on "that" side, under the armpit, sort of parallel to where my boobs are. I have had to do the MLD with the LE therapists. Immediately, even though it was not in my arm, I was fitted for a sleeve. I was told to wear it until my trunk LE issues cleared up. They felt having the pressure on the arm protected the arm (having trunk LE is appaently, to them, less of a big deal than Arm LE - they told me, well, we need to move it out of your arm and into your trunk anyway, etc). They felt the sleeve also Kick started the drainage everywhere.
I have had to figure out myself what works and what doesn't. I wear a Target "Assets" shape wear garment when I do serious cardio, like biking miles and miles, I don't always wear the sleeve, and I've been find. I ALWAYS wear both the sleeve and the Assets top when I fly, or else I get in trouble, and it takes 3-4 weeks to resolve. I found that doing Yoga poses that are inverted (upside down) cause flare ups, I had a "head stander" and I had to give that up. I am very careful with inversion now, b/c it seems to flare it up.
I seem to remember reading that Federal law that was the one about they must offer us reconstruction, also saying they had to cover LE. It infuriates me about insurance companies. LE is clearly a medical friggin issue! ugh.
http://www.cancer.org/Treatment/FindingandPayingforTreatment/ManagingInsuranceIssues/womens-health-and-cancer-rights-act This mentions lymphedema specifically.
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I got to meet Journey yesterday and today, which was fun for me. I did not get to see Gin, I think I was discharged before she got back to her room. So sorry we missed each other! I am going to come up on Sunday for Massey to check my arm, then I have a post op at the Center Monday afternoon. Does this match any of you?
We left the Center at 3, having called ahead to make sure our hotel room was ready. When we showed up, the promised room is not ready, so we are waiting in the lobby with our computers. I am doing great, areas look wonderful, but at this point I am so very tired I really need to lie down. Kinda frustrating. Plus, I think I'm reacting to my antibiotic again........darn it!!
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Well I am totally grateful for all my insurance has paid for, but it seems so petty for them to say no to a LE sleeve or what not. Springtime, I was in Target today killing time and saw those Asset tops, and was thinking about trying one of them. Does it seem to help?
Can I just go in then and get measured for the sleeve? Do I need to get the swelling down first or how does that all work?
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If you go over to the Lymphedema After Surgery forum, you'll find lots of terrific info. The general idea is to learn how to reduce your swelling with wrapping and massage, then to move over to a sleeve when you are in maintenence. However if you are flying, you do need to get a sleeve and guantlet measured to wear, and probably want to consider an Underarmour compression shirt worn inside out and a size too small. This is the combo I use for travel.
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KC - Your insurance is supposed to cover treatment and sleeves for lymphedema. The usual is 2 sleeves per year as well as 2 hand pieces if needed. That part is included in the women's rights and cancer act. (I think Spring posted it above). You need to let them know that it is the law and that you are fully aware of that fact. I have found the best way to get my sleeve covered is to either go to a PT for my fitting and have them submit the claim, or go to a fitter that is also a breast prosthetic fitter - they usually have the knowledge for claim submission. I do believe the other key element is having your doctor write you an order for the sleeves - hence the reason you need to go to someone who is familiar with coding and will send to your insurance company. I have never tried to get reimbursed on a sleeve that I have gone out and bought on my own, however, I have had several sleeves provided by a certified fitter that billed my insurance directly. They have always been covered... and I am not over 65!
Well... wouldn't you just know it - I would be the only person on here that I have ever heard of, that has gotten an infection from my tattoo. My breast is red, slightly mottled and firm, and very warm to the touch on the left. The right looks great - the left, not so pretty right now. Sent pics to Celeste and started an antibiotic tonight. Hope it works quickly! Guess I will increase my intake of yogurt for the next week... LOL.
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Infection from a tat?? That really is rare--even in the college kids I see who goes to god knows where to get theirs done! Heal quickly, my friend. Your bike is calling...
I'd be out riding today (75 degrees in NOV???) but have this crazy C7 radicular thing going on and can't use my arm hardly due to pain. Wonder how closely to surgery I can get an epidural injection? In the meantime, it's on to the Valium and Percocet (another reason to stay off the bike!)
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I totally agree with what Nordy wrote ref. the LE sleeve. You need a script from a doc, you go to a place to get fitted, and they submit. I don't believe it is possible to get reimbursed once you buy one on your own. I always go through the same riga-ma-roll as Nordy describes above. Now, if you want to pay yourself, there is apparently a site called lymphadiva.com or something that sells really cool looking sleeves, and woman I know gets "seconds" there. I borrowed one once and it was totally cool. You don't get fitted and all that. The woman I mention has all different colors for all different outfits! ha!
Dragon, is your LE in your trunk or in your arm, or both? I only get it in my trunk, so the Assets top is essential for me, esp on the plane, and I also wear the sleeve to be on the safe side when I fly or get my heart rate really up. This is a process of exploration, I've found. You need to try all sorts fo things to figure out what works for you.
KC, my LE therapist also mentioned an UnderArmor top as an option, but I never tried it. I am going to keep that in mind. I also wear my Assets top INSIDE OUT - because the outside is smoother and less irritating on the skin.
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I have some in my upper arm between my elbow and shoulder, then mainly my chest, side and under arm. I know my surgeon here would write me a script for one, but I don't think I'd fit a standard size? My upper arms are a little large already sadly. So the chances of getting one before the 16th???? Looks like I'll be wrapping and mabye trying the Assets top?
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Also I was looking at lymphdiva.com and I see I could probably order a large, but not sure how you determine the compression? 1 or 2?
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Minnesota, sorry to hear that you are not feeling well and Nordy, sorry to hear about the infection! I've been more tired after this surgery than usual, and slower getting back to my walking routine, but had a lot to deal with at work and did end up at my office all week. The good news is that while my husband and I were in NOLA last week, we were negotiating to either purchase or lease a great building we found just before the trip, and we got it---we are moving the business next month! Things are going to have to happen quickly because we need the offices reconfigured (move walls) and the typical carpet and paint refurbishment done before we can move in. Our busy season starts January 2nd, so we have to really work quickly to be settled before things get crazy again. I need to build up my strength again so I can be useful during the move. I am really excited because we will be the sole tenant in the building, so we can put up signage and advertise our web site, and I can plant flowers to beautify my surroundings.
For all of you dealing with LE, there's a surgeon here in L.A. who does two types of surgery to treat it. (The first option is also done in NOLA.) I know of a female police officer who was out on disability because she could not fire her gun. She had a successful surgery with the doctor here where I live, and is back on duty. I'm sure she'd be glad to communicate with any of you interested in the procedure she had--just let me know.
Here is his LE page, and some info from it:
Vascularized Lymph Node Transfer - Lymph nodes are taken from the groin and moved to the armpit to improve the clearance of lymph fluid from the affected arm.
Lymphaticovenous Anastomosis
Lymphatic channels are connected directly to the veins using supermicrosurgery.
Surgical treatments are most effective in patients whose extremity circumference reduces significantly with compression wrapping, indicating most of the edema is fluid. Patients who do not respond to compression are less likely to fare well with lymphaticovenous anastomoses as a greater amount of their increased extremity volume consists of fibrotic tissue, protein or fat.
Noncompressible limbs may respond to specially performed liposuction followed by lifelong subsequent use of compression garments.
Well, my BFF here at home is taking me out today for a month-late birthday lunch. Can't wait to see her! She shattered her leg and ankle in a tandem-bike accident over the summer and has had a really tough recovery. Anne, be careful about riding under the influence. I hope you find some relief from the pain.
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dragonfly- my first sleeve/gauntlet was ultimately too big, since i was able to reduce my arm further over time. i now wear the smaller size on my effected arm and the bigger size on my good arm as precaution when flying. you really do need to have an experienced person do your measuring. does your le therapist not do this?
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I am wearing the new black body girdle and thought I'd send in my vote FOR it. I'm 5'4" and it fits me very well. The biggest plus with it, for me, is how nicely foam-lined the zipper is, so it protects my owie spots better. I brought my old ones along in case I preferred them, but I'm finding this newer style to be more comfy. It is a bit long in the legs for me, so that lace edge is kind of annoying below my knee. If I were shorter, I'd probably be tempted to cut the bottom off. Another thing which I am really grateful for with this newer model is the wider band at the top. For those of us with lymphedema, the old ones had a harsher upper edge, which aggravated my LE tremendously, and i had to surround that area with ab pads just to be able to wear it. WIth this wide-band stye, it's definitely more workable around LE. And with their doing the lymph node transfers there, now with Massey on board, they will continue to have increasingly more patients there with LE.
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I don't know, that's my frustration, because she's never mentioned the need for a sleeve. Even when I asked about it for flying. She just showed me how to wrap. There are 2 stores in town so I may go by and see if they can just measure me and go from there.
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You go, girl!! There is no question about your needing a sleeve.....or 2 sleeves if you had bilateral. You also need the gauntlet/glove option to protect your hand. Are you doing MLD on your upper arm yourself?
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Thanks
I did have bi-lateral but only had lymph nodes removed on the left side. My right has no swelling. Dang I'm mad I waited this long and hope I can find one before I fly on the 16th 
Yes, I try the MLD some, but I'm a little freaky, I can't stand touching my arm and side where the LE is, not directly. Through clothes it's ok! LOL!
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Dragonfly - You want the lesser of the 2 compressions. I believe the Lymphediva site only has 20-30 and 30-40. Go for the 20-30 as overcompressing can do as much damage (probably more) as undercompressing. As far as size goes - the regular off the shelf Jobst and the Lymphedivas are very generous in their sizing. Since a lot of the swelling began in my upper arm, I don't tolerate any of the ones with a silicone band at the top... including the Lymphedivas even though the way the integrate the silicone is different than most of the other companies. Here is where things get tricky - finding out what works for you and what your arm/trunk best respond to. Many of the fitters will carry the off the shelf sleeves - it will take your doc 2 seconds to write you a script. Take it to the fitter where you can try a couple on with them there. Most sleeves are not returnable, so if you go out and buy one on your own and it does not work for you - you eat that cost. You live in a metropolis - there should be SOMEONE who has them in stock for you!!!
Anne - thank you. I don't know how much my bike is calling... we are starting the rainy season and I am still wiped out from last weekend. Did yoga today and that was just about enough! I think the infection is wiping me out too, but the antibiotic seems to be working - even though the redness is still there, much of the heat has disappated. I tell you... just leave it to me!
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