NOLA in September?
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This is what is worn after stage 2. It's used because of the lipo, to keep the swelling down and increase healing. They are given out in black only I believe? I love mine, I'm one of the very very few though.
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Well thank goodness I will be having stage 2 as we head into winter...
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You only wear it for the first 2 weeks I believe??? I was more comfortable with it on so I wore it longer
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So. ladies, just checking in and wondering, for those of you who had surgery a couple of weeks ago with me, how much pain are y'all still having? Tonight I am a little urprised that I am having as much pain as I am. Granted I have had a couple of extra roadblocks to clear, but still, I am a but surprised that I am not moving better and am still having so much pain. My breasts are particularly sore tonight in addition to the abs, etc. I have a resaonable tolerance for pain - the nurses were a bit surprised in the hospital at how little lortab I took - so I don't think I am being terribly wimpy. I did pull a muscle as well, so I am not moving as much because of that. I wonder if that (more sitting around) is just making things more painful in general. Sorry, I am being a whiner . . . I do hope y'all are healing well and can enjoy the holiday weekend. Ro and nowords, hope you are doing well . . . Sorry again for the little meltdown . . .
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i still am having some pain. still in my back. related to not being able to stand up straight. i am still slightly hunchy. i stopped taking pain meds around the clock once my last drain was out. i only have a few lortab's left so i only use when the pain is intense. like today i knew i had to walk alot so i took that and a flexeril for the muscle spasms i have when i walk. i also have slight discomfort in the area between my breast - the sternal area. otherwise my breasts dont hurt. not bad discomfort just something i notice. my back pain is my biggest problem which doesn't bother me if i don't move. lol i am going for physical therapy in june so i hope that helps with that. otherwise i feel better every day and am counting down to this wednesday when i can stop wearing my compression garment/girdle like thingy.
i forget who asked about deciding in uni versus bilateral mastectomy, i decided to do bilateral because i had a lumpectomy 11 years ago and decided if my cancer came back i wanted mastectomy. i am brca2+ so i decided on that for the other breast also. i wanted to be done and i didnt want to have to recover from major surgery twice if i could fit everything in to one surgery.
bdavis - i didnt even realize you had on a wig. looks real!
i am still laying around a lot and after a shower need to rest but i know i am on the road to recovery. everyone who visits me think i look great but i know i am not 100% yet. i will get there and i am still happy i had the surgery.
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Gotta have my waaah also...had an awful night Thursday and a terrible day on Friday. My tummy has, all along felt very tight and swollen, making it hard to eat much at a time. They told me at the Center that this is normal ( but I never hear anyone else complain about it????). On thursday night after a very light and bland dinner , my tummy got so bloated I was afraid my incision would bust open. DrS 's pts are sent home with both a binder and a Dom to start whichever you prefer after the last drain comes out. I spent the night in the Dom and did not sleep at all. I was miserable on Friday, too and called the Center. They wanted me to go get an US to rule out seroma but I could not bear the thought of the local hospital and that grubby US machine on my belly near my incisions.I promised I'd go to the ER today if I got worse. After being up for 36 hours I finally slept and am much better now. In fact, today was my first day off pain meds-- just taking Motrin. So go figure. Maybe I've turned one of those corners . I have only been out of the Dom for showers. I had my last drain pulled on Tuesday and only needed to be below 50 ml. I'm thinking that just that extra fluid in an already very tight space was what put me over the edge. Also I think my first Dom ( they sent me a bigger one) was just tooo tight. Please DIEP ladies, tell me your experiences with tummy recovery and all the tightness. It makes sense that there would be a lot of swelling -- they detach and lift your skin and fascia all the way up to just below your breasts , so that is a lot of space for fluid to accumulate...I'm curious about how this was for others and what the time frame was for healing. Thanks!
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my stomach is tight but not as tight as it was initially. i remember seeing you at the hotel and wishing i could stand straight like you jerusha. i am able to eat fine. i probably wish i was forced to eat less to lose some weight. lol when they showed me the dom i was like no way so i only came home with the binder that i will be happy to take off soon! sorry to hear about your tummy and no sleep. even when i hurt i was able to sleep so i feel for you.
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Salty foods and lots of activity can temporarily increase swelling and cause a very tight sensation. I'm seven months out from having my ab incision revised, and still have to be careful to avoid salt or I really pay for it. If I do gardening and am bent over for long periods, that also causes swelling in my abdomen. It can take a year or more for things to settle down. Bromelain (pineapple extract) is supposed to help alleviate swelling naturally, but these types of swelling are temporary and are usually relieved overnight. My stage I was almost four years ago, and I stayed home from work for five weeks. I'm sure I had a decent amount of pain and fatigue at two weeks and even three weeks out, or I would have been back to work sooner. Even though these surgeries are superficial and no muscle is cut, it's still a lot of surgery and it takes 6-8 weeks to really feel like yourself again.
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Hello All,
I decided to finally join in! I have been being a creeper! LOL! Reading everyones experiences and learning from everyone. I have pm'd Minnesota and Candysmom but I haven't posted because I have been in my own nightmare of a failed reconstruction for the last 2 years starting with TE'S, implants, infections tons of surgeries having TE and implants in and out a few times, all on my radiated side (radiation 14 years ago) Every surgery left me with an open wound starting pea size to a baseball size to a failed tram flap in March, open wound, stinky, drainy, infection, 40 hyperbarick tx's and IV antibiotics. and not sure if or when I can go to NOLA to get fixed. Right now I have sent my paperwork to NOLA and have been consulting with Liz and Dr. D and it looks when I am healed up good which won't be till fall I will be God willing ready for a hip or some other flap to fix this horrible thing on my chest, and while I am there maybe the rest of my ruined body. I should of listened to Sandy, Minnesota before I had this tram flap but I wanted to get done and I smoked and thought I would have better success with a tram considering all my complications and the smoking. WRONG! really I think I had this infection a long time which never was really gone. The radition side just got worse with all the surgeries, in any case I am doing ok now and feeling good after surgery. Just have to go to wound care and keep this open wound clean and healing. Wow - new skin is finally growing, infectin almost gone and I am getting geared up for NOLA. Everyones experiences has encouraged me to move ahead. I just have to come up with a lot of money since my insurance doesn't pay much but I'll figure it out. I can't ruin anymore body parts - I only have so many to use!! LOL!! Just wanted to thank everyone for shring your stories and I hope I can join your club!!
For those that have to have chemo I just want you to know that you don't have to lose your hair. I had chemo 2 years ago and used the penguin cold caps and saved it. Read the threads of cold cap user's past and present we started 2 years ago - hundreds of women since then are saving their hair. I actually work for the inventor of them consulting women on their use if you have questions pm me. Doctors do not tell their patients about them. Some don't know about them and say they don't work and others know they work and still don't tell. Just like reconstruction you have to find out for yourself. I wish I knew then when I started all of this what I know now. Boy would I have made different decisions. And I am a question asker and still got screwed up! Thanks Again everyone for sharing! Geralyn
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Liz R, WOW, 6 months in compression -- my hat is off to you! I hear you will have a much better result cosmetically if you can keep your compression on longer after lipo. I had mine off in 2 weeks or whatever the minimum was! And I even spent the big bucks and purchased the Medera or however you spell it.
I use Palmers massage cream for stretch marks on my scars that are no longer red, prior to that, when they're red, I use Maderma. Though, is it your skin that is tight, or the inside? Did you have plication? It may be that your body is used to all the support of the compression garment and needs a few days to get used to life without it. Did you go cold turkey or try to wean yourself off it?
For those of you with tightness -- it sounds normal to me. I was sort of tight and swollen for at least 5 months after stage 1 and stage 2 (when I had the plication). Hang in there. It does resolve!
I also had hyper sensitive skin between and below my breasts after stage 1. I asked Dr. D about this later, and he said it's because of all the "attention" that area gets. It was so sore I couldn't even blow air on it! Felt like burning/stinging. I think it was the nerves trying to repair. That went away too, and a the center they were suprised and it seemed that this was unusual.
Hang in there all
Geralyn, welcome to our little group. It sounds like you've been through a lot. I know if you can get to NOLA, if anybody can, they can fix you up. I am so sorry for the issues, and then the failed TRAM!! Good grief. Sounds like you are on the right track now... Thanks for sharing your story, you never know, somebody could be reading it right now and learning. it was because of a thread like this that I discovered NOLA was an option for me -- Thanks to Sandy. I was fortunate to start at NOLA -- but many do not, you are not alone, that is for sure!!!
Spring.
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Thanks Springtime,
I just about read everyones stories from page 1. I just never posted because I was in such a dark place, angry, depressed for the first time since I had my masectomy and not knowing what I was going to do next and didn't want to scare anyone. I kept my faith and just prayed and found the inner peace and strenght to move forward and I am just thankful there is hope for me down the road and just pushing through everything. I know one thing for sure. NOONE is touching me (my ps) unless I have surgery at NOLA. I am taking only my wound care doctor's and Dr. D's advice to get to the point were I am ready for surgery again. The only thing that's a bummer is I can't go swimming this summer with no skin on the lower part of this flap and I live on the lake. Other than that I am feeling pretty good and glad to have a plan!
Like you I have been posting on this site through every part of this treatment starting with the BM, to chemo, and reconstructions and any other issues along the way and have found help , support and a wealth of knowledge beyond belief. Could you imagine the shape we would all be in if we didn't have each other and relied only on the doctors advice only! Scary to think about! Thanks for the welcome!! Geralyn
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Just waking up (!) after a night on pain meds, so still groggy, but want to say thanks ladies for sharing your experiences. tigsun and jerusha, maybe I am not so far behind in the healing process after all.
Regarding what Spring said about finding this thread and discovering that NOLA was an option, thanks to Sandy - well Spring paid it forward, I ended up in NOLA because of Spring. So I am so grateful for her and for this board, and hopeful that other ladies find their way there because of us. Aftter I was discharged from St. Charles, we drove through the Quarter, got out to go up to see the river, and stopped at a cafe so I could sit for a second. My husband had to go to the car for a minute. A lovely couple at the next table asked if I would like a drink or anything - they were so sweet. I declined but we started talking and when she asked what I was in NOLA for, I decided to tell her. Turns out that the woman is a nurse in Pittsburgh, and she was very interested to hear about the surgery. When my husband came back to get me, I told her as I left, please tell people who you care about, that this great place, and these great doctors, are here.
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Ok ladies, making my reservations at Bienville House, I hope it's nice? Staying there the 3 nights before surgery. Really wish I could stay there after too but have to wait and see I suppose.
I found this one online but has anyone ever heard of it or stayed there? http://www.maisondupuy.com/
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What a great board and now I guess I 'qualify' to respond. I am now scheduled for my mastectomy and DIEP on June 14, 2011 in NOLA with Dr D and Dr Legarde. I was actually scheduled with a ps here in Colorado for a June 8th mastectomy and Sept 23 DIEP - and just switched 2 days ago (talk about stress!). Thanks to this board and others my husband learned of NOLA. He was always uncomfortable with our CO ps and the delayed reconstruction that I had to do to accomodate their schedules. It wasn't necessarily in my best interests but the surgeons. We just made this change in surgery 2 days ago and I have to say I am very at peace with it and am looking forward to getting it done now. The traveling is causing some logistical issues but nothing that can't be taken care of. We have our flights booked and are now dealing with hotels.
We are booked in the Bienville House for June 12th and 13th pre-op and back again for the 17 - 21 post-op. We thought we would stay at the Hope Lodge but after reading these entries we have became unsure and decided to book a hotel so we would have options (and can cancel if we need to). I'm concerned about the hotel not having a recliner. Will that be a problem? Does Hope Lodge have a recliner in each room? Will I be comfortable in a bed propped up with pillows? Our room at Bienville has a sundeck which I think I will use each morning (not sure of the heat later in the day) and I'm looking forward to being able to do that. I'm concerned that Hope Lodge doesn't have an outdoors garden area to sit (maybe it does but I can't find it on their website). Anyone that has gone before me that can help me with the Hope Lodge? I would really apprecate it!
Thank you so much!
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I've been to the hope lodge for stage 1 and stage 2. I'm torn honestly, it most definitely serves the purpose. It's comfortable, clean, and free is good, but the location is the worst part really. I am booking a room at the Bienville for the 18-21 and may get one after surgery, not sure yet on finances. Keep in mind it's super hot and humid this time of year there too .
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Hi there JustLaura, You've made a great choice to go to NOLA! I am 2+1/2 wks post op and was thrilled and amazed at the lovely and conscientious staff at the Breast Center and SCSH. As a medical professional I can tell you the medical and nursing care was was excellent. I can assure you that you have never received care like this before! Once the ball gets rolling, youu will be thoroughly looked after and not need to worry about any details. Once I made up my mind to go, my surgery was scheduled a few weeks later. It was a pretty hectic time, but better in a way to have less time to fret. We stayed at the Monteleone the first 2 nights, and at Homewood Suites the last 4. Homewood is not modern or fancy, but very clean and quiet. We appreciated having a kitchen and a 2 room suite, so that I could sleep or rest and my husband could have the other room. It also helped that they have an established relationship with the hospital. At the last minute we decided to spend an extra night at the hospital and it took one easy phone call to change the reservation. We had 2 queen beds so there were already about 8 pillows. Enough to be propped up to "recliner angle" with one under my knees and even one left over for DH! They were very accommodating and would have brought more. I was very comfy in the bed. There were coffee and sandwich shops on the block where my husband got stuff during the day and the hotel was within 2-3 blocks of some fabulous restaurants for dinner. Yes...you will probably feel well enough by 5 or 6 days post op to go out to dinner!!!
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JustLaura, Like Jerusha, I am 2 1/2 weeks out, and cannot say enough good things about NOLA. Better care than I could have imagined - they say the devil is in the details, well, NOLA handles all the details for you, including if you stay at Hope Lodge. Katie, the young woman who handles all the bookings if you want her to, is very competent, and very sweet, and can help with whatever you need. I was in the hospital longer than I expected, and husband was getting a bit stir crazy. He mentioned that he wished he could go for a bike ride. 30 minutes later, Katie called him with numbers for bike rentals in the area! (Her degree is in hospitality something or other, and she is darn good at it. And she looks like Britny Spears, to boot!)
As for Hope Lodge, I spent the two nights before my surgery there. It is spotlessly clean, and basic but quiet and peaceful. There is a large communal kitchen, and things like coffee and tea to help yourself to. But as Dragonfly mentioned, there is nothing nearby. And there is not much of a garden area, really a small walled patio. I sat out there one evening to get some air, but it is not what I would call a garden area. You are across the road from the levee and the river, and that made for a nice walk one breezy evening, but other than that, there is not much within walking distance. We did take a cab to a restaurant, and it was about 10$ each way. After the restaurant, we walked a couple of blocks to the St Charles Streetcar and had a nice evening riding the streetcar down St Charles and then back up again, before we cabbed back to our hotel. So for us, it really worked out fine for that evening. It would probably cost quite a bit more to go to the French Quarter, though, but thats not where we were headed. We had 2 beds and a recliner in our room, I think the rooms all have recliners but you would want to check. Anyway, it worked out fine for us to save a bit of money beforehand and I may do it that way again when I go for stage 2. My concern with staying there afterwards was the size of the shower. Now don't laugh, I am not being a shower snob or anything. And maybe it was just our room. But I really think that I would have had a problem showering in the very small European-size shower after surgery with my drains and all, and especially with the restriction of not allowing the water to beat down on your new breasts. Perhaps a different room would have had a larger shower, and certainly a handicapped room would have to have had a bigger one. But ours would have been problematic for sure. So be sure to ask. As it was, we had planned to be at the Homewood Suites after surgery anyway, as my husband was planning to work and he wanted a separate room. But the staff at Hope Lodge could not have been nicer, and I even met a woman there (she may have been the director) who had been a patient of Dr D's! That boosted my confidence even more to speak with her the morning we left for my surgery. Feel free to let me know if you have any more questions.
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Dragonfly- what are tou having done to stay so long? I'll be at the Bienville house on the13th and 14th. Then the Hope Lodge after. Can anyone tell me where to go shopping for food for the hope lodge and i'm now guessing you have to take a taxi. And when we get to the Bienville where is a good place to eat?
JustLaura- congrats on Nola my first time also
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I am just having a stage 2 revision I suppose you call it. I asked to come in a day or 2 early to site see with a friend.
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Bienville House is walking distance to tons and tons of great food options...
I toured the Hope Lodge when I was down a couple of weeks ago.. all rooms have a recliner and two beds.. and heard that Drew Breese will be donating hospital beds that elevate in the near future for all rooms to have one... unfortunately not in time for my visit in July.
My plan is to stay at the Hope Lodge for the days immediately following my hospital stay and then move to the Monteleone for a couple of nights. My husband can't be down with me for the whole time, so he will fly down after my post op, spend 3 days with me at Monteleone and then we'll fly back together... I have a friend who lives in NOLA who wll be with me for all the rest of the time.. so lucky for me, she'll have a car and can drive us whereever while at the Hope Lodge... and not staying at her house cause she has 3 dogs and two sons and her husband smokes etc... just easier to stay at Hope Lodge.
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JustLaura, welcome to our little group here, and congratulations on posting your very first bc.org post! I know that can sometimes be nerve wracking, but hopefully worth it for all the support and info you'll get here. There will be several ladies down there the same time as you, lucky girls!
Geralyn, you are on the right track now. and you have a plan. Good for you! I think the hard part is behind you! Kudos to you for doing your research and figuring out what is best for you. It's a journey we all have to make!
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A couple of small drawbacks for staying at Bienville post-op is the tiny bathrooms with little to no counter space, which really comes in handy for drains (not to mention cosmetics, etc.)! We stayed there two nights when I flew from Chicago back home to L.A. via NOLA, so I could have consults with Dr. D and Dr. Cheng for the breast revision and hysterectomy I wanted to have done together. I was glad that I wasn't recuperating at the time. Also, our room faced Decatur Street and it was very noisy at night. Other than that, it was nice, but we've stayed in several NOLA hotels now, and I wouldn't choose it again. Everyone has their own preferences though---I had a horrible experience (a rodent, bugs, and trapped inside for hours by flooding) at the Place d'Armes, but it's a fave of Minnesota's. My personal favorite is the Marriott on Canal Street, due to it sitting right on the French Quarter, a great gym, spacious rooms with comfortable beds, and the view. I always request a high room on a corner facing both the Misssissippi River and the FQ.---up near the 40th floor, it's really spectacular.
I recuperated at the Homewood twice, and like it very much, but would not feel safe walking from there to the FQ alone. There aren't many people on the streets between Homewood and Canal St during certain times of day, so make sure that someone accompanies you on walks if you do venture out. We had pizza delivered there one night, and salads another. Having a kitchenette was really handy, as well as two bedrooms.
Leslie, near Bienville is Cafe Giovanni. I've eaten there twice, and really enjoyed not only the amazing food with very artistic presentation, but also the piano, with singers strolling from table to table. Minnesota and I dined there one night, and she really enjoyed their oysters, while I had a delicious portabello entree. We actually took photos of our plates, because the food was just beautiful!
I have no plans to travel to NOLA until September and sure do miss going there, even if it was almost always for surgeries! I recovered so quickly each time and had so much fun getting to know New Orleans...I think I'm suffering withdrawal pains!!!!!! It's wonderful that so many of you can meet up while you are there. The first couple of times I went, I didn't have any surgery buddies-- it's much better with friends from these forums!
Speaking of forum friends....my friend Alaina is going to have her last chemo in about 2 1/2 weeks, then her onc is giving her a break for the summer after about 18 months of non-stop treatment. Alaina spotted a post I wrote on bc.org about three years ago that I was traveling to NOLA alone for a surgery. She offered to pick me up at the airport and take me around. We became fast friends, and she is fighting recurrence with everything she's got. Please keep her in your prayers.
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Thats the power of this forum, Sandy. Now she will have lots more people praying and sending up positive vibes. I wish her the best in her fight.
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Evening ladies! Man I wanna rip out the drains near my abs!!!! Yikes.. Stomach incision hurts no major issues with the boob area. I was practically racing thru the halls at Nola but not as much activity today. I walked the length of mom's street. I can tell ya that I felt much better in that Nola bed! Working on my patience 1 day at a time! Still trying to get comfortable in the bed. Mom has a recliner and I watched tv there all day. Gonna try the bed 1 more night. Oh yeah my boob feel big and heavy . The stomach thing is like "whoa" I need a pain injection at the site..lol
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Thank you everyone for sharing your experiences. What a great resource this board is!! Thanks for the info that a bed with tons of pillows will work just fine - that does make everything easier. And all of the info on the Hope Lodge and hotels.
Katie is supposed to call me on Tuesday (since we didn't commit to the surgery until late Friday on a holiday weekend - great timing). We kind of paniced when we tried to make reservations at the Commander's Palace for Sunday dinner before my pre-op on Monday and they told us there was a huge convention in town and they were booked up. We shifted into high gear and just booked a hotel so that we could make sure we had a room. I also wasn't sure if Hope Lodgen would have openings or if we would find it booked since we are doing this all so late in the game.
I'm definitely second guessing the Bienville now for recuperation (but I think we will keep it for the two days pre-op) and am thinking that Homewood would be better. My husband does plan to work while we are there - so the two rooms sounds nice. I loved the idea of the Marriott and having a view but I just checked it and while they do have rooms available they are much more expensive than the others.
We usually get 1 king bed - but I'm thinking we should do two queens so that my husband can get some sleep. Is that wise? Would you recommend two beds? Am I going to be tossing and turning all night long?
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I was at the Monteleone a couple of weeks ago... but never saw a room... how are their bathrooms for recovery.... My plan is to go there for 3 nights after my post op...
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Has anyone heard of this hotel: http://www.maisondupuy.com/
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Dragon--I booked at the Clarion, which is the closest to the hospital (about 2 blocks walking distance) and has a $79-89 hospital rate. It's all junior suites. I haven't stayed there, but so far it seems like the most frugal option. A suite, close to Walgreens, grocery stores and restaurants and the hospital, and free breakfast.
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Sounds like a good place, then you can do the street car at least to the french quarter right?
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JustLaura, there's ALWAYS a convention in New Orleans. You probably won't be tossing and turning... Once you are in your little nest you may not budge till time for next pill! Lying on your back doesn't leave much option for moving around. Your nest will leave plenty of room for your husband, but I'd worry that he may wake you, rather than the other way around.
BDavis, we stayed at the Monteleone before surgery. The room was lovely but extremely SMALL. My husband and I both noted that it would not have been very comfortable to be in after surgery when you are likely to be spending most of the day there. I am drawing a total blank on the bathroom. Yikes. Seems to be one of those anesthesia lacunae...very disconcerting. I searched for a pix to jog my memory, but couldn't find one. I'll keep trying!0
