2018 DIEP Surgery
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Bella2013, I am in San Antonio, but not having it done at PRMA, but at UT Health Science University Hospital. PRMA would not take my insurance. But my surgeons have very good references. My PS does this type of surgery all the time.
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Not sure how many drinkers we have out there but I discovered the cloth bags that Crown Royal comes in are a perfect size to put your drains in, all you have to do is attach a landard and you are good. So that’s what I am planning to use, if anything it will make for great conversation. Lo
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Eilijahgirl, Good thinking...Crown Royal!! Another question, should I travel home in pants one size bigger to accommodate the belly bloat and possible a compression garment? Does NOLO use these things?
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Elijahgirl, I like the way you think! If they don’t take my drains out today, I will start putting them in a little purse with a long strap so I can be more mobile. It has only been a week, but there is very little coming out of my drains. I didn’t have a lot of drainage after my MX, either.
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Ziggyrox
NOLA does take bc/bs at out of network rates. You can call them and they will tell you exactly what you can expect to pay. I remember this distinctly because only last year I had bc/bs, and this year was cigna ppo, which is in network for them.
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To be more mobile with the drains I pinned them to my abdominal compression belt. Wearing loose soft pants (lounging) and an oversized shirt you would not be able to tell that I had drains. It helped to get the really large safety pins. These will also connect to a land yard for showering.
I had to wear my abdominal belt 24/7 for 30 days. My PS said to do this for the best result. After my sentence was up then I could switch to Spanx or a Spanx like garment. I wore the long torso Spanx. It started right under my breast and continued down to my thighs. This was so much more comfortable than the ab belt. When I work out I still use my belly band for support. I can’t do push-ups or planks without it.
Hope this helps a little bit
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I just got back from plastic surgeon and I forgot to ask him why he doesn't want me wearing an abdominal binder....
And he wants me to stand up straighter! Anyone else having a hard time doing this!? When were you able to stand up straight?
I still have blood/fluid collection in abdomen and right breast so 2 drains still in :
Pathology report back: tumor was large and the cancer cells were spreading outside of the duct but the margins were great (got it all). The other spot that was "unknown" was also only DCIS. Got it all. Lymph nodes all clear
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....and I recieved compliments on my drain bag holder (made for me by my 13 year old daughter - who happens to be the baby I'm nursing in my aviator photo!)
Here is the you tube video explaining how to make it
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Check out marsupialpouch.com. So comfy and work great.
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Hey-I was lucky and got all drains out today. ADLs will be a lot easier now.
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my DIEP is at 7:30am central time. I am worried about him cutting stomach muscles. He has to sacrifice some muscle in 50% of his DIEP surgeries but he said it is very minimal and does not leave any loss of strength. I just hope I get to keep all my muscles. Everything else seems good including the ketorlac pre insicion and no verses, opiates or narcotics. He will use my leg for the IV site. But he does plan to discharge me on Friday. He is aware I have no care giver and believes I will be able to handle it. Night all. Going to sleep early. I Am very tired
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Mimi- Don’t stress drain holders. NOLA will give you a pink pouch to wear to hold your drains. You get to take it home after you’re released. For the shower, pick up a cheap lanyard at Walmart that has a clasp you can undo at the back. The drains have a loop on them and you just slide the loops over the open end of the lanyard then clasp it around the back of your neck. Shower with it on and then after drying off put the pink drain pouch back on and transfer the drains into its pockets. The only extra things I really needed were 2 small rectangle travel pillows (picked them up at Bed Bath and Beyond). They were down alternative and the perfect size for putting on either side of my lower back to help with back pain, under my arms, and to cushion the seatbelt in the car. Hope this helps!
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Carmstr835, best of luck. Let us know how it goes when you are able
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good luck tomorrow, carmstr!! 🍀
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Thank you Bella, Vegal,keeponmovin, Carmstre, and Lula for taking the time and offering some great ideas! I finally have a confirmed date for diep flap surgery, July 31st. My caregiver has some reservations but I think I convinced her that she doesn't need to be a nurse ! I have my travel plans made and will be staying at the Hope Lodge, not as convenient as some of the hotels but I like the idea of having a kitchen to prepare our meals. Not sure if we should rent a car or if shuttling will suffice. Does anyone know how difficult the freeways are around the airport?? Love the pillow idea Lula, I will check into those for sure.
All the best Carmstr for today's surgery, we need to remember this is not our doc's first rodeo and we have faith in their skills, please let us know you are doing well.
Thanks again for all the helpful info, I am counting down the days now!
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Mimi- we rented a car and freeways were fine. Not sure about parking at hope lodge - location and cost. Maybe someone else can chime in. I know the fees on a rental in NOLA that get tacked on when you pick the car up (fees that are not disclosed when you book online) are outrageous-like $500+ outrageous. You can probably get by with an Uber or hire a car service for discharge and post-op days in particular.
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carmstr835
Where are you located? Are you in the United States?
Good luck!!
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Thanks for the heads up on the fees, that's criminal!! Hope lodge can get us to hospital and maybe the grocery store. I want my caregiver to get out and see the sights when I am in the hospital, don't want to entertain, if you know what I mean, thanks again Lula!
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For those of you who have had the DIEP on one side, how much swelling did you have in your DIEP breast, and when did it go down? Right now my new boob looks a lot bigger than the original one, but I don’t think that’s going to be permanent.
Thanks,
L.
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Mimi, I want to be sure I understand. Does Hope lodge provide transport to and from the hospital and also to the grocery store??
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** some questions about post op recovery **
===> SWELLING <=== How much swelling is normal? I am retaining blood/fluid/hematoma in my breasts and my abdomen. My breast drains are out (left taken out the right fell out on its own). I have one abdominal drain and I am now focusing on making sure it is hanging low.
I haven't been wearing a bra or abdominal binder. Could that help reduce this swelling?
I asked my plastic surgeon what can I do and he said to rest and don't over do it with activity.
===> ACTIVITY LEVEL <=== I mentioned to my docs that I'm so tired. And I'm confused. I have no idea what baseline should be. I can't even make a meal for my children. My boyfriend is doing everything. At what point will I be able to function to at least be helpful. When can I drive? My doc said maybe driving by this weekend - I hope so.
==> BACK TO WORK? <== when did you go back to work? My brain isn't working and I'm exhausted. I think I may try after 4 weeks - and I found out I can go back for only 2 or 3 days a week at first because once I'm back I don't have any time and can't take sick days for a while. Luckily I have time saved up and getting disability.
==> WHAT IS THE FUNCTION OF THE ABDOMINAL BINDER? <== my doc didn't want me using one because he worried it would ride up and interfere with the flap/breasts. I'm very small so this would probably happen. But I'm swollen and retaining fluid.
I'm post op day 11 DIEP flap and post op day 9 for the emergency surgery to remove the hematomas
Can you tell I'm not feeling well today?
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Curious to hear from others on JustKeepMoving post. My PS said not to wear the binder in bed because it can ride up and touch the flap. And when wearing it during the day to keep it snug. She suggested cutting out a half moon shape from the binder so it doesn't rub the flap,
I'm really swollen belowthe belly incision and numb. I hope that doesn't last.
I planned on back to work in four weeks, hope that doable.
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Leatherette,
My boob is swollen and lumpy. I'm thinking that there is some seroma action going on in there. One of the ladies on here said it will settle, so I'm keeping my fingers crossed. Also, my PS said the new boob would be bigger (though mine is not really bigger, just WIDER), and that he would address that in Phase II.
My abdominal incision is ok. I still have one tube (left hip) and the incision doesn't look as neat on that side (overhangs as opposed to the right side in which both the top and bottom of wound are level).
My biggest concern is the nipple. The whole nipple/areola are much darker and the areola is shedding with new lighter skin emerging, but the nipple is black and scabby. I'm hoping that sloughs off as well. I know my surgeon did nerve reconnection so I don't know if that may have caused some trauma.
Justkeepmoving, my surgeon had tried to give me full body armor -- the kind with the straps that goes down to mid-thigh and has about 150 hooks to secure it, but I didn't fit into any they had in inventory so I went out and bought one. They had told me during preop that I wouldn't need it until the 3 week mark, but when I went for my 1 week post-op, they told me to go ahead and start using spanx because they are more comfortable. I do have a binder from when I had babies, but I only use that when the spanx are being washed. I might try the full body armor after the last drainage tube comes out, but I'm dreading using the bathroom in that thing regardless of the convenient zipper that it has in the nether-regions. I've been living in camisoles with built-in shelf bras because he told me I needed a little bit of support, but nothing tight.
Overall, I'm feeling good. The biggest pain right now is that a lot of the skin at the top of the boob and under the arm is sensitive (like a sunburn). I'm chalking that up to nerve regeneration which is a good thing. The boob, side boob, and area between belly button and incision are totally numb.
My husband went back to work yesterday after being home with me for 2 weeks. I'm still not allowed to do much around the house, though. My 9 year old is helping me a lot. I have my 2 week post op tomorrow and I'm hoping I'll be able to drive soon, but from what I've read here, it's usually at the 4 week mark.
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Justkeepmoving- i hope you feel better soon! I’ll see if I can help...
Swelling- yes the binder and a bra can help. The bra part is tricky though. At NOLA they give you the bra they want you to wear for 4 weeks nonstop except for when you shower. It was very similar to a front closing style genie bra. You don’t want anything too tight as it can restrict blood flow. I did order a bra from Anaono (the full coverage pocketed makemerry bra) that they were ok with me wearing immediately after stage 2. On the drain, position shouldn’t matter so much but making sure the bulb is scrunched up after closing top is really important. Making sure you’re stripping the drain tubing is also important...if it gets clogged it can affect the suction. The binder I was given looked a lot like a back brace for women (it was curved in the middle). If you put it on low enough around your hips I found it didn’t ride up. If your dr has been using the one for men or it wasn’t being put on low enough I can definitely see how it would ride up (Note:putting the female version on upside down also causes it to ride up- there was quite a learning curve - LOL!)
Activity level-everyone recovers at their own speed. I’m usually one that boynces back quick but not with this one. I couldn’t really help with cooking til about 4 weeks. Just started driving short distances at 4 weeks (who knew you used your tummy muscles so much to drive the car?!?). Best advice i can give is Give yourself time and rest when your body tells you to. I know it’s hard to do when we’re so used to being SuperMom/SuperWife/SuperEmployee/etc, but your body needs it. I was still sleeping/chillaxing in the recliner watching tv or reading between naps through week 4. Your DH and kids can handle things for a few more weeks or so. Don’t try to rush it as it will leave you even more exhausted.
Back to work-again everyone is different. I went back at 10 or 12 weeks. But my job is a lot of driving, getting in and out of the car over and over all day, lifting and carrying things from the car to the destination. If I had a desk job I probably could’ve gone back earlier. Again, take the time you need. You don’t want to go back too early and leave the impression that you can’t do the job anymore.
Bottom line:time is your friend for recovery. Take your time and heal. I hope this helps!🍀🙂
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I agree with Lula, I didn’t drive until week 5. I tried driving in my neighborhood after two weeks and it hurt to press on the brake or the gas pedal. Lula is right...who knew we used abs when driving.
For several weeks be sure to use a pillow that will cover you from your breasts down to your pelvis area when riding in a car. It should protect you and allow the seatbelt to go over you. You never know what can happen and you don’t want that seatbelt to activate and tighten anywhere on you. Also keep in mind airbags will come at you hard and fast. I would imagine that kind of force would undo all the surgery that had been completed. Can we say “OUCH”!
You will feel better in stages. The first stage is to have the surgery behind you and return home. YEAH! The second stage is getting the drains out. YEAH! YEAH!! The third stage is driving again. I am describing stages that start you on a path back to your life. For some it will be getting back to normal but for most it will be adjusting to a new normal. A new normal is not a bad thing. A new normal can be taking inventory of what you have learned about yourself during this horrific event in your life and letting it become the new you.
For example, this event in my life has reshuffled my priorities and they needed to be reshuffled. I have much more clarity about what is important in life and what isn’t. I am more patient with others around me than I used to be. I draw boundaries and say no when I used to say yes even if I didn’t want to do something. I don’t let toxic people into my sphere of influence. It’s like my spirit can’t tolerate these people. I just want to flee! I am more in tune with my body. I have neglected myself for the last six years thinking that I was ok and healthy. I obviously wasn’t ok. I have learned that I am not a doctor and I can’t self diagnose because I am likely to get it wrong. I have learned to advocate (strongly) for myself. I like the new version of Barbara 2.0!
Keep in mind that I am about 20+ weeks post BMX with DIEP so I am feeling much better both physically and mentally. I didn’t feel this way the first two months. My message is “it will get better”. Don’t let this horrific event in your life take the best of you. Let the best of you fight for a better version of you and a better quality of life.
Love and ((hugs)) to all of you!!
Barbara (a.k.a. known as Bella by my grandchildren
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Hi everyone, hope this is the right place to ask for information?! I am waiting to get clearance from my oncologists as to whether or not I can go ahead with DIEP surgery - should know next week. I was diagnosed stage 4 a few months ago which is why need clearance. The microsurgeon PS I saw feels I should not have problems based on his exam, and of course being stable prior to surgery. Are any of you who have had it done been at stage 4? I had a single mx left side, and healed quickly and well; unless I moved unexpectedly I did not feel pain, only took periodic Tylenol after surgery. Thank you so much for any thoughts...j
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Hi Mustlovepoodles....I just talked to Mark at Hope Lodge, they will shuttle to the hospital between certain hours. If the caregiver is staying with you and wants to visit while you are in the hospital, they have to find their own transportation such as UBER. Yes they do get to the grocery store at certain times so that is a good option as well. I talked to Mark, you can call him direct, I just looked up their website and used the number there. Heidi must make reservations though, when you know your dates contact her. Hope that helps! Looking into these exorbitant fees I have heard about...crazy, don't need a surprise like that!
Bella, great post and encouraging words, thanks!
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Cev20, I wasn’t able to keep my nipple, but I have read other people’s descriptions of what their nipples did after DIEP, and it sounded like what you describe. Then a normal nipple eventually emerged.
I was laying here in bed and felt something wet on my hip-my drainhole was leaking! That did not happen after they removed the drain post-MX! I had a bandaid on it, now a gauze pad!
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Hi Bella
I just loved your post .It was so uplifting .My BS told me that you need to learn to live with your diagnosis .I hated that statement .I want to forget this part of my life . If we get the right treatment and take care of ourselves then why the hell should we learn to live with the fact we had cancer .Once the cancer is out from our body we are cancer free
Like you even I took my body for granted .I thought I was healthy and do not need to do anything much .But now it is different .I am waiting for treatment to be over then I will work on my diet and exercise
I fully agree with you that toxic people should have no place in your life while you are struggling with your cancer . After my diagnosis the first thing I did was I stopped all communication with anyone who gets on my nerves . I have been too nice my whole life and paid a price for it .My sister lives in the same city but I have not seen her face after my cancer She is the kind of person who think people invite cancer through their bad karmas and negative energy .So after my diagnosis I knew she is going to give me her sermons and advise alternative healing like Reiki .It was in my best interest to purge her from my life .And God what a blessing it has been .I sometimes thank my cancer for giving me guts to do so
I had to go for re excision after lumpectomy with unclean margins .Will get report next week .
One thing that you lovely women helped me during this ordeal is that now I am no longer scared of mastectomy . When my first lumpectomy failed I was shattered that such a simple operation has gone wrong . But it also gave me a new perspective .Why the hell should I be scared if mastectomy with reconstruction can help me avoid radiation and future mammogram .With every passing day during my cancer journey I am broadening my outlook and approach which is indirectly empowering me .
My brother is an oncologist in Dallas. Thanks to all you awesome ladies on this fantastic forum I hardly need his advise for minor issues. All the information is here for me .
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https://m.youtube.com/watch?v=hSTgE2T80_o