NOLA in September?
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Hi Ladies,
I just thought of another question. Will I need someone to help out at home after Stage 1? If so, for how long? My MIL was saying yesterday that Guiliana Ransic said she still needed help getting dressed after a couple of weeks (she had implants not DIEP); I am assuming it would be more recovery time from DIEP??
Thanks!
CB
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Caitin....YOGA pants!!!! Comfy ones! button up shirts or very loose ones. I took comfy pjs with button down shirts to wear instead of the hospital gowns. I am sure there other ladies with chim in with more.
Michelle
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Hi Caitlin. Yes I'll be at St. Charles. My husband and I are flying in on the 5th and plan to spend the 6th sight seeing. Then I have appointments on the 7th and surgery on the 8th. We'll be staying at Homewood Suites. He has to leave to go back to work after a week, but my sister is flying in to take his place and fly home with me. I'm hoping I'll feel up to doing a bit of walking around before I go home but I guess I'll see. I'm stressing a bit about what to bring too. When I realized I don't own a single thing than buttons or zips up, I went to Value Village and picked up a few things, but I'm wondering if I actually WILL be able to pull things over my head if they're loose and stretchy enough?
BTW, I'm 55, BCRA1+ and coming in from Seattle. I have two adult sons who have not been tested yet. I'm not hard to spot because I have red hair almost long enough to sit on.
Eva
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Nordy, you told us everything about NOLA except what Dr. S told you about the LE issue. Still mulling it??
Thanks, everyone, for all your kind words. I have to say with all honesty that I'd never choose to have BC, but having had it, I am blessed with the friends I have made because of it. I know you all feel the same. That's what's so special about this place.
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Caitlin and EvaM -- I wore sweats and zip up hoodies. Some of the hoodies pockets had gaps in the inside that allowed for me to put the drains in there. Like Betsy, my one hip drain was in for a record 9 weeks (we hadn't taken into account that I lost weight and when the swelling went down that I needed a smaller compression garment, but the Center sent some and I was good to go.) I also wore broomstick or tiered cotton skirts with large shirts that buttoned up the front. Depending on whether you are uni or bi-lateral, you CAN get things on over your head IF you are unilateral. My sisters and I worked out this method when my Mother lost use of one arm and shoulder -- only unilateral. I found that sales at Wal-Mart in the larger ladies size yielded all the shirts I needed (light weight so washed and dried VERY easily). For me, I bought (notnecessarily everyone did this!!!) a ladies camping funnel for urinating so that I didn't have to worry about "spraying" my DOM (nickname we use here for compression garment). Comfort, comfort, comfort -- those are the words -- and larger than you normally wear. For me, yoga pants never did feel loose enough. FWIW --
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Thanks for the tips Michelle and Celtic!
Eva, I am 40, have a baby boy (1 yr). It's nice that your sister and husband can help you. My mom and husband will be helping me out.
I have a couple of gift cards from Kohls so I think I will be able to stock up on zip up hoodies. I do have some yoga/sweat pants that I can wear.
What about bras, ladies? I am a DD now and would like to "transform" into a C. I need to lose a significant amount of weight after surgery so I am not sure what Dr. Sullivan will recommend.
Did you prefer camisoles or tank tops to bras? I am assuming I will want a bra to fly home...don't want my girls giggling all over the place, lol!
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They give you some bras. You will wake up from surgery in one. Nothing to brag about but opens in the front and soft. I wore my for a while then when i got home wore some of my bras that are similar to sports bras but not constrictive at all. NO UNDERWIRE for a while!!!
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Caitlin and Eve, It is so awesome you will be in the surgical center together! Also, there is a "What to pack for NOLA" thread that is like 2 years old, if you can find it. Search under the categories under reconsturction I think! But the advice so far is spot on.
Anne, I know exaclty what you mean! About the great friendships here, though BC does suck. At least there are some awsome experiences and friendships along the way...
Eve, Nordy is from Portland and a woman named Trisha is from Eastern Washington. You have some verteran ladies out near you!
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CaitinB - You will wake up in a surgical bra after your surgery and will need to wear that bra for about 6 - 8 weeks. The Center will give you another one so you can wash one while wearing the other.
I had a double mastectomy with my Stage 1 DIEP and I could put loose fitting tops over my head by the time I left the hospital. In the hospital I didn't wear much. They have robes and footie/slippers that you can wear to walk down the hall. You may prefer to bring your own but you may get the robe dirty so keep that in mind. I wore little footie socks that I got at Bath and Body Works (scented lavendar - although no way could I smell them) - I had a different color every day and believe it or not that cheered me up a little bit.
My Stage 1 was in June so I wore a lot of sundresses - they are perfect if the weather is warm. For my Stage 2 in Oct I wore lots of yoga pants.
I also used my iPad alot (the Center has wireless). Either to stay in touch with friends or to read. I would have been lost without it. Also my iPod. There is a DVD in your room that you can use if you want.
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Caitlin-
You don't have to wear the surgical bra the whole time, but you do need to wear a bra. The weight of the flaps could damage the blood vessels if you don't.
The surgical bra I had was too lightweight to wear after I got more active. After my first stage 1 I had trouble finding a bra for my DDDs so I had to double up on the surgical bra and wear one of those pregnancy tube top things on top of that, until I found a bra that fit.
Front close is easier to manage, and you should be able to find those lightweight cotton leisure bras that fasten in the front. If you're A-C cup those are pretty easy to find at the discount stores. D cup or larger you may have to go online. Leading Lady Leisure bra is one that goes up to larger sizes, both in the band and the cup. If you want to wait until after surgery so you'll know what size you are I'm sure you'll be fine in the surgical bra until then.
btw... I think the center is currently using the surgical bra Dr. Massey has been using for ages. It's a very lightweight knit cotton bra that closes with velcro in the front. Not much support at all.
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I haven't seen anyone talk about the anesthesiologists much so far. I assume they are also very experienced and kind? I had a hysterectomy 6.5 weeks ago and I was really worried about the intubation since I sing. I'd heard stories of injured vocal chords, etc. After talking with the anesthesiologist he agreed to use a tube two sizes smaller than usual. I also put tape on my forehead with "Caution! Singer!" written on it in red sharpie to remind him after I was out. Everyone laughed, but I woke with no sore throat. I did have bad nausea and constipation though. I'm worried about that.
It sounds like I'll need to find a couple of loose button up shirts. I don't care for hoodies because of my hair and it's hard to find hoodless hoodies! I own one front zip sports bra but it's pretty tight. I guess I'll bring it and see.
I'm also a little worried about flying home. There are no direct flights between Seattle and NO so I'll be changing planes in Denver. I have arranged for a wheelchair to make it easier, but it's still a long trip - nearly 7 hours + having to get to the airport 2 hours early. I assume and hope I won't be trying to empty drains in the airplane lavatory.
Gah! It feels like it's so soon and so far. Almost a month. Less than a month. I'm glad I'm doing it and glad I'm doing it at NOLA. But I'm grieving for my breasts.
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I haven't seen anyone talk about the anesthesiologists much so far. I assume they are also very experienced and kind? I had a hysterectomy 6.5 weeks ago and I was really worried about the intubation since I sing. I'd heard stories of injured vocal chords, etc. After talking with the anesthesiologist he agreed to use a tube two sizes smaller than usual. I also put tape on my forehead with "Caution! Singer!" written on it in red sharpie to remind him after I was out. Everyone laughed, but I woke with no sore throat. I did have bad nausea and constipation though. I'm worried about that.
It sounds like I'll need to find a couple of loose button up shirts. I don't care for hoodies because of my hair and it's hard to find hoodless hoodies! I own one front zip sports bra but it's pretty tight. I guess I'll bring it and see.
I'm also a little worried about flying home. There are no direct flights between Seattle and NO so I'll be changing planes in Denver. I have arranged for a wheelchair to make it easier, but it's still a long trip - nearly 7 hours + having to get to the airport 2 hours early. I assume and hope I won't be trying to empty drains in the airplane lavatory.
Gah! It feels like it's so soon and so far. Almost a month. Less than a month. I'm glad I'm doing it and glad I'm doing it at NOLA. But I'm grieving for my breasts.
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Hey newbies!! Welcome! For packing and purchasing suggestions, change the top of the page to page 407 or 408. Jeskachi and Dana both made useful lists. There are some more suggestions on 442 and 449. And when you are feeling stressed, anxious, nervous, read all those pages in- between! It is so calming. I can't believe I have been on this board for 100 pages! But in the weeks leading up to stage 1, I ended up reading every page, and I felt so much better, like all my girlfriends in the world had come together to support me, give advice, read my mind. You will feel very informed and prepared by the end!! But it does take time so start with those pages and work from there! If I was losing sleep worrying anyway, I figured I could lose the sleep reading a few pages of wisdom.
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EvaM - DIEP is the only surgery I have ever had (so I have no comparison) but I tought that the anesthesiologists were great. For my Stage 1 and Stage 2 I had the same one and woke up completely lucid and talking. I never had a sore throat.
I would expect that your zip sports bra that is pretty tight now not would not be a good choice for post-surgery. You will be swollen also - so will need something a little bit larger and more roomy. You do not want to compress your new breasts for quite a while.
I would HIGHLY recommend a wheelchair on the pass through Denver. DIA is HUGE and if you have to go from one concourse to another it will be a tough and long walk. I did walk from our gate to the curb after my Stage 1 but I could take all of the time in the world and did not have another plane to catch.
Use the family restrooms if you do need to empty any drains during your trip home. It would be much easier and convenient than a stall.
Just some thoughts.
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Thanks, Laura. Yes, I'm flying home on Frontier Airlines and called their customer support (which was GREAT). They're arranging for a wheel chair.
I guess I'll wait on a bra and just live with what they give me there until I know better what I need.
Someone suggested having a no-hands earpiece for my iphone since it's tiring to hold a phone to ones ear the first few days (and I'm sure I'll want to talk to people). But I don't use one now and hate to spring for it unless it's really important.
Eva
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Caitlin and Eva... After my BMX I was able to wear shirts that went over my head.. so I would not go out and buy a bunch of button up shirts... maybe bring a couple of your husband just in case... and when choosing yoga pants, find the kind that have a soft wide waistband, not the kind you might wear to the gym... remember that you may be wearing a compression garment (for hip flaps) that need to fit underneath it comfortably. I bought Gillian and O'Mally brand from Target... cheap and comfy. As for a bra, I wore the surgical bra they gave me (black with hook and eye in the front) for 2 weeks, then went and bought other ones.
For me, I loved having:
- ipad
- slippers
- my own pjs
- my own robe
- cell phone/charger
- yoga pants
- loose shirts
- granny undies to go over the compression girdle
- toiletries
- book
- maybe a fanny pack if you want to try that for drains
After hip flaps/BMX, I was walking about the Quarter one week post op... at one week post op I was also doing all of my own dressing and needed no help getting rready in the morning or for showering... although it did take an hour to shower etc... after DIEP, I was also walking around the Quarter one week out. And then I was home at 10 days post op alone... but no young children.0 -
EvaM- My experience with the anesthesiologists at SCSH was good. This was an issue for me because I had had problems with previous (non NOLA) surgeries - pain control problems and lack of communication. My experience at NOLA was COMPLETELY different and positive. I was told that at SCSH an anesthesiologist starts you off and then a nurse anesthetist takes over with the anesthesiologist coming in and out of the O.R. to check on you or as needed. I talked to an anesthesiologist at my consult and of course at my preop appointment. Also though most people love the preop drug versed I don't like it and had no issues having it omitted from the drugs I was given. Talk to the anesthesiologist and also to the nurses who call you at home to arrange surgery and tell them exactly what your concerns are and how you want to be treated so that you are comfortable. My experience is that they will do everything they can to accomadate you and make you comfortable.
Justlaura- In terms of postop - the anesthesia drugs given during surgery cause amnesia when you are 1st out of surgery. (For me it usually lasts for at least 45 minutes). So actually most likely you may have been initially sleepy, then awake and talking for quite a while. At the point when the amnesia is gone - you feel that you have just woken up (no memory of anything before) -but actually you have very likely been up and talking for quite a while. (If you look at your pacu records you can see how many times they asked you to rate your pain - done every 15 minutes for I think at least the first hour -then compare that number to how many times you actually remember them asking you to rate your pain in the PACU)
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Cailtin and Eva...I believe Betsy gave me the same advise and packing list and it was perfect and right on!. The day i was released my hubby and i walked to the French Quarter. I did have a complication the next day BUT it was a very rare one and had nothing to do with anything i did. Also, I have 4 children all under 12. I was able to do some things for them but i gave them all jobs even my 5 year old and they all helped. When i came home there Christmas Break started so they were a big help actually. My 7 yr old has a vacuum fetish and that is ALL HE DID!! But...if you have children that are younger you will need help...
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Caitlin - my little one was 1 when I had my stage 1 and we did fine. BUT you will be on lifting restrictions for six weeks. I put notes all over my house because I am known to do too much too soon. My daughter would just climb up on to my lap to snuggle. And times where she would fall asleep in my arms, my husband would carry her upstairs. A couple times he was working, so when I thought she might be falling asleep, I would leave my door unlocked and call my neighbor when she was ready to be carried upstairs. Yes, it may take a little extra planning, but totally do-able!
Eva - as Spring said, I am in your neck of the woods! And no, there is not one flight from Portland or Seattle that is direct. But it is okay! You will want to get up and move around anyway - so much better to help avoid any kind of clotting issues. I am the rare one that did not want a wheelchair and did not use one. But then again, I can give the evil eye when I want people to stay away from me... LOL. If you want to call me, I will PM you my number!
As for clothes - I had bilateral and totally wore shirts that went over my head. I had a couple soft knit skirts that were perfect for post surgery, but I also wore regular shorts that zipped up - they were just a little on the loose side, so no problems there. At the time I went (and this could have changed since 09) they had you stay in the surgical bra that they gave you in the hospital 24 hours a day (except for showering) for two weeks. I wore mine foreeeeeeeeeeever because I had a dream early on that I took my bra off and my boobs fell off with it. Of course it never happened, but I wanted to be extra cautious!
As for my appt. with Dr. S - it went really well. Given my history of LE and the fact that I have had a severe case of cellulitis, and that I am barely keeping it in check despite my meticulous care of my arm (yes, you could say I am a little anal) - he truly believes that I would be a good candidate for VLNT. This is no surpise to me as I heard it from another doc last spring. Seems that they are both in agreement here... SO... time to start the battle with the insurance idiots that be. And he wants me to talk to Marga too, just to get her take on things. I was planning on going to SLC for her conference in Feb. anyway, so maybe I will plan a brief office visit while there. Grrrrrrr... not looking forward to the battle with the insurance company. Please say some prayers as they are not flexible or knowledgeable. We are still trying to get my testing put through and I only have one more chance at an appeal
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Nordy..what is VLNT?
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btw... I highly recommend going to one of Dr M's seminars. Incredibly informative about breast recon and lymphedema. And, she buys you lunch!
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VLNTX - Vascularized Lymph Node Transfer
Nordy - I was encouraged to go to NOLA by Dr. Marga after I contacted her to discuss LE and LNTX. I was curious if it could be done simultaneously wiith BMX and flaps. I developed LE after my Lumpectomy and AND. She is absolutely amazing!!! Although I contacted her about flap surgery she suggested that Dr. S be my surgeon for reasons involving other medical issues that I have. She genuinely cares about her patients and will only take you on as a VLNT patient if she really thinks you'll benefit. My LE was really mild back then. Unfortunately, it's been harder to control it since my stage 2 procedure. I don't think I'm at the point that she would consider me for transfer but I keep it in the back of my mind. LE sucks doesn't it? Keep us posted after you meet/speak wiith her.
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Nordy - I forgot to say, good luck wiith the insurance battle!!!!!
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Is anyone going to be in NOLA next week besides me?
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Nordy, praying! For an insurance miracle!
Need2New, I think you are the onlly surgery we have so far for next week...
Jan 19 - Need2New - Stage 1 - NSSBMX w/ GAP flaps.
Kbodie and Betsy, thanks for the packing info!
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Toomuch, You say you have lymphedema-did you have a bilateral DIEP?? Sounds like the surgery made your LE worse-I'm considering bilateral DIEP but also suffer from truncal and arm LE. I have had a consult w/ Dr. Massey and she is great. She also told me that the DIEP would help my LE?.... I meet with her again in Feb. to discuss possible surgery. I had originally wanted to do the node transfer but she saw a better outcome for me w/ the DIEP. I will not risk more/worse LE to have a DIEP. It is so painful now!
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Katiejane - I have arm, trunk and breast LE. My breast and trunk LE actually seemed to improve after my Stage I S-Gap. However, after my stage 2 my arm LE got worse. I am still less then 3 monts post stage 2 and it's possible that the swelling will still improve. I'm not sure that the flare is directly related to surgery. As you know, it's often difficult to determine what causes a flare. I am really happy with my breasts and am glad that I had the surgery. I'm hoping that good MLD, wrapping and LE therapy will bring my LE under control. I guess I'm fortunate that I don't have pain associated wiith me LE.
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katiejane
Dr. Massey did a uni-lateral stacked DIEP for me and I had mild lymphedema, with a flair up that I was treated by PT for 6 weeks to get it under control. I would say that my arm, hand and truncal lymphedema is 80% improved since my DIEP surgery. I had a great deal of scar tissue fused to the ribs from rads, and a large rads field because of an over 10cm tumor....I am so happy that I went through with the surgery...
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Two questions:
1. I had DIEP at the same time as my MBX and AND. I had 21 nodes removed (curses!!). How does DIEP help with LE? I think someone mentioned something about nodes getting moved with DIEP flap, sort of incedental. Or does it have to be purposeful? And then those nodes sort of reattach/regrow? Am I off here? I don't have LE, but I do have the heaviness (and paranoia) and see an LE therapist on occasion, follow all precautions.
2. Seroma. It looks like I will need my seroma drained again, as I see the waves again. I'm calling tomorrow morning about it. Running, I think you mentioned something about it getting taken care of at stage 2?? But mine came from stage 2, soooo. Is it something that may need to be fixed? I'm not understanding the consequences of a seroma, especially in my breast vs hip, and initially having 210 cc drained. I will be asking the Center these things tomorrow, but I'm curious if any of you can add anything.
I think I almost posted something yesterday, but forgot to hit submit. Uh I'm so scatterbrained lately. Still fatigued and I cannot get back into the grove of things. I'm going to concentrate on making sure I'm well hydrated (I'm probably not) and getting a better sleep pattern back.
Welcome to the newest ladies! You've made a great choice in NOLA. I didn't have ANY throat irritation after both of my surgeries. I had bilateral mastectomy, axillary node dissection with immediate DIEP; I could put on regular (scoop neck) tshirts or tank tops and wore wrap cardigans. I was fine with hospital gown/robe as I didn't want to get my stuff messy. The center gives you a little kangaroo pouch for drains which I wore under my shirt. After I was discharged from the hosp I didn't need any help showering or dressing. Once I was home I didn't need help myself, but I needed help with meals, laundry, driving for the kids. I nested like crazy before leaving for surgery, so that helped.
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