Not-so-good surprises in DIEP surgery and recovery?
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I am only 10 days out and this is what I wish I would have known:
Bank your blood a head of time 2 units.
Recliner really helps with independence. The thing I had no idea is if you lie down in bed, good luck getting back up
. You really could use a "pusher" because you cant lift yourself with your arms, your tummy is shot....so how can you get up???? The answer is a recliner or you need a helper.Tell yourself to stand up as much as possible, as the inclination will be to hunch over. When you hunch over your back cramps up. Believe it or not, the more you can be upright when you stand or walk, the better you will feel.
Make sure to take the stool softeners! For something easy on your system take Smooth Move tea. Really tastes pretty good and it helps. The first week or as long as you are on pain killers you don't want to skip any of that.
They will not let you have food until the night of day 3. Only ice chips. I wasnt hungry but had no clue that was part of the equation.
Standing in a shower with drains is to me impossible for the first few days. A big container with warm water and soap with wash cloths are a much better solution.
If you can get a toilet seat that goes on top of your real one you will be much happier. You know those things that go on top of the toilet that makes it so much higher and you dont have to bend down and stand so far.
The shape of you breasts at day 9 is scary......more like pancakes...flat and wide spread. I hope that changes
You will be ok. The first week is very rough for most I think. The first 4 days the worst part. Realize they wake you every single hour for 4 days to make sure there are no clots. I understand the norm is every hour for 24 hours then they go to 2 hours. Because one of my flaps was a little hard to get working during surgery they did the check every hour for 4 days. And yes you are very tired from that on top of the shock that happened to your body. I remember at day 2 thinking what did I do. How will I get through this. I stood up and my bp dropped so in my first attempt to walk I broke into a cold sweat, couldnt breathe and thought I was going to throw up. I laid down and slept for an hour. I thought what will I ever do?
But dont give up. It DOES get better and quickly.
The next morning I got up......but moved slow. Sat up. Waited. Put both feet on the floor. Waited. Stood up. Waited. Then started to walk. Guess what it was like a whole new experience. I couldn't walk as much as some of the super strong who have been on these threads even though I am 52 and in pretty good shape. I would say it took me a week to feel stronger like I would move around a lot more.Don't let yourself get down. Realize you will be ok again.
My guess is when the drains come out you will feel like a new person. Thats what I am told. Tomorrow I get 3 out of 4 remaining from the original 6 removed.
You need to keep everything you need on a low counter near you. Its hard to move around a lot.
The common call for loose pants is a good one. Also button down shirts. A pull over wouldnt be too pleasant with drains.
The pain isn't horrible. The first few days stay ahead of it with what they give you. Don't be a hero. Less pain means move movement which means faster recovery.
Listen to Mariah Careys song Hero. It helps
Wishing you all the best.
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Hear, hear for getting the drains out!! When they are in, it seems like forever until they'll be out, but once they are out, you realize you've really come a long way and the drains are not coming back!! (until Stage 2 possibly, depending upon what they do).
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I had the immediate reconstruction with implants but what is common across the mastectomy issue is the depression.. I am always amazed that when you are given the list of specialists they don't include a therapist!!! It's so important to hear your own thoughts so that the depression can lift asap... You've done a great thing asking these questions here! Why not add a therapist to your mix? His/her job will be to help you hear what you want and need and help you relay that to the family, friends and the docs'... Best of luck and I hope everything turns out beautifuly!!!
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Yellowbutterfly -- This is sooo helpful! Thanks so much for the detailed itemized list. I am definitely getting a recliner and loose pants and button up shirts, and all the items you mentioned.
Just curious -- how do you bank 2 units of blood? At the hospital? Do you request to do it before the surgery?
Hope you are feeling better and better by the hour!
Bella
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You do it through the red cross. There is a request your surgeon needs to send them. Then they set up a time to do it. I only had time to bank one. I had to get a second one from their regular supply. That night I had the chills, fever, headache and Im sure it was from the blood. The good news is in 24 hours that went away as well.
You need to have time inbetween to get both done. I was too late and was only allowed to do it once. Seems like if you have 6 weeks or even 5 you should be fine for getting both done.
I think even if you use their blood you will be fine. But there is not a reaction when you use your own.
Good luck Bella!
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One thing about the button up shirts and loose pants... I live in yoga pants at home so that was not a problem, but I almost had no button up shirts. I bought a night pair of soft pj's with loose pants and button up top (classic pj style)... I have not worn them yet and I'm Day 7 post-op today. The hospital wanted me in their gowns only, and on my ride home I could barely manage my drains sticking out of my pants. They were pinned to the bottom of my compression garment and it looked ridiculous, they hung out the sides. Thanfully my winter coat kind of covered them up, and I was just going wheelchair to car. When I got home I couldn't wait to get those pants off, put on my mid-thigh nightgown (cotton knit) with a deep v-neck and long sleeves (loose, no buttons, not too long, not too short). Did manage to get it over my head and into both arms (like I said, it's loose) and even though I'm unimx I am sure I could have gotten it on if I had bmx.
Frankly this type of short gown has been much easier around the house for checking drains, going potty, peeking at my foob (the v is low) to make sure it has good color, and it doesn't bunch up around me in bed like pants do. If company comes over or I go to the dinner table, I put my bathrobe on over it.
Just wanted to put that out there, that button up shirts are probably good for lots of things post-mx, but I say Pants on the Ground, Pants on the Ground, Go ahead and leave those Pants on the Ground!
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XmasDx,
Congratulations on a successful surgery! Thanks for your Pants on the Ground advise. How was your procedure? Did you have a lot of pain? Were you comfortable staying in the hospital?
Wishing you a speedy recovery!
Bella
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Hi Bella,
The procedure ran 11 1/2 hours (1 1/2 hours mx, 10 hours DIEP). I did have a lot of pain, BUT mostly when I moved. I would say it was 4/10 when I laid still, and 9/10 or 10/10 when I had to try to reach for anything or move in any way. So hopefully that gives you some comfort, I didn't find that you just lay in bed in agony. And even moving (like when they first tell you to get up) gets better the more you do it.
I found the smaller annoyances like the iv in my hand which hurt when the blood pressure cuff went off hourly to be troublesome sometimes. I would hold that vein with my finger tightly putting pressure on it when that cuff would go off. Probably just my problem, unique to me. I don't like having iv's in my hand, but the nurse said for days it's better for mobility than the elbow. Walking around with the iv pole is always a joy, with your hospital gown flapping open in the back.
There is more of my detailed story on the February 2011 mastectomy thread if you want to peek.
I'm sure you'll do great.
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hi, my wife had her DIEP last October (at the same time as her unilateral mastectomy). Fortunately there weren't any major surprises, she had the surgery on Friday and was moving around late Sunday, she was getting around and going out about 2 weeks after surgery, and her final tube came out 3 weeks post surgery. She's been very happy with her choice. I'd recommend you look at the DIEP 2010 thread, we found it to be very helpful for us.
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Hi all,
I had a MRI-guided biopsy this last Wednesday, during the MRI, the radiologists did not find any problem with my right breast, so they didn't do biopsy on the right. They did find something on the left (my DCIS is on the left) that is not in my DCIS area but a small stuff (5mm) that was unclear. This confirms with my previous MRI that was done on 2/14/11. So they did a biopsy for that area.
It looks like my right breast is clear. I will learn the result of my biopsy on Monday. I also did a BART test after my BRCA1 indicated a change of mutation of uncertain significance. My BART test was clear.
So it seems that I will do unilteral. And my doctor and I will discuss whether it would be MX with DIEP or lumpectomy or MX with implants. She was leaning towards implants if we need to do a MX. She thinks DIEP would require too long a surgery time for me as a previous pulmonery embolism patient to handle.
I will find out more on Monday. But it seems I may not do DIEP after all. I will keep you all posted!
Best,
Bella
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Hi Ladies,
I live in Arizona and I have been told by my plastic sergeon that I am a candidate for a DIEP surgery.I have read all of your posts to Bella and I am very consered because I had a Tram flap and have 2 implants. But my right side has so much scar tissue from the radiation that it will affect my right arm in the next few years. Has anyone seen any of the specialist in Phoenix. If so I would like to know your experince. Good Luck Bella in your surgery and a speedy recovery
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Nannie,
Good luck with your recovery. Did you have to do radiation after a MX?
I just decided that I will do a unilteral MX with immediate implant reconstruction. My BS will also do a SNB for my left side. I don't think I will do anything to my right side becuase the recent MRI didn't show any problems for my right side. And I don't have to do radiation after the MX.
All the best,
Bella
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I had a DIEP in Oct. 2010....While the "tummy tuck" looks good with clothes on, when unclothed, my, ah, pubis area still shows its 55-years and the whole thing puffs out and is bizarre looking. I was prepared by my surgeon ( a powerpoint in the office on the first visit) for the new breast, but like another post, the belly skin is much whiter than the old breast, and there is a large circular scar which was pretty horrifying at first. I am used to it now, and they are creating the nipple soon.
Otherwise, the breast part of the procedure was not bad at all. The drain was removed in about a week. The belly drains were in there for weeks, though.
The DIEP took a lot out of me, and I still don't have my old energy back.
I could not sleep properly for weeks, could not get comfortable in bed AT ALL, and could not stand up straight for at least a week, resulting in back pain. The stretching of the stomach skin is very painful. I would suggest using the pain meds as much as you can.
I went back to work full time after 8 weeks, and the gut incision is now--five months--no longer pulling. But I had more surgery (lipo, a breast lift on the other one, and lipo on the hips) a few weeks ago, so here we go again...I think the whole procedure takes longer than they say, and I would double any recovery time they tell you!
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kcshreve: Wow! I still can't get over the BMX plus DIEP in 4 hours. Where is that experienced surgeon? That is absolutely fantastic!
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1) What are the things that you didn't anticipate to happen that you wish you were told by your doctors? I went in for a DIEP and came out with an SIEA flap. Actually a much better outcome for me. See next question.....
(2) What are the things neither your doctors or yourself had anticipated? That I would have internal bleeding under the flap not once, but twice after my initial surgery. So, I had three major surgeries within 24 hours. BUT....and this is HUGE...I did not lose the flap.
(3) Exactly how long did it take for you to recover to being fully normal? I was pretty much doing whatever I wanted in 5 to 6 weeks.
I did have to have blood transfusions, but what was I to do...I was bleeding. I am very happy with my results and do not regret my choice at all. I love that my foob is really me. I love that it moves with me, looks like me, feels like me. And, I got a tummy tuck out of the deal....and I had been growing some nice belly fat which turned out to be for an excellent cause.
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I had BLMX and DIEP in early Dec. It took 7.5 hrs. I was in the hospital 4 nights. My drains came out4 days later. I used over the counter pain mess after 24 hrs. I was up walking around 14 hrs post op. I made a point of walking the hallway every 4 to 5 hours usually after I went to the bathroom and then went back to sleep. My husband stayed in the room with me which was really great. The hospital provide a pull out sleeper sofa for him in a private room. My Dr feels it is very impt. to have a private room and he has a deal with the hospital to provide all his patients with a private room for no extra charge.
I found that having a water bottle that I could keep close by was better than a cup and straw. I never had to ask anyone to get it for me except when it needed to be filled and my DH did that for me. I kept my IPhone with ear buds close by so that I could listen to music or books on tape. I never watched the tv. I found communicating with family and friends via texting was better than having to talk to everyone. The hospital food was less than appetizing so my DH went down the street to Whole Foods and brought me whatever I felt like eating at the time. I had a little fridge so I could keep snacks and juices nearby. I was never really hungry for much more than soup, cheese and crackers and yogurt.
I found wearing a large cotton men' s "wife beater" t shirt and pinning my drains to it worked really well and kept them from being in the way when I went to the toilet. I left the hospital in yoga pants and my DH button down shirt. I lived in yoga pants and my husbands shirts for a week and then I could start wearing some of my own shirts and sweaters. I walked a lot the next week. At least 1 mile twice a day. I forced myself to stand upright because my Dr said it will be better for my back to stand upright as much as possible and that even though it felt like I would split my abdominal incision, that would not happen. When I was in the shower I would crawl my arms up the wall and lightly stretch them up over my head until I regained full range of motion. I also did yoga work that helped bring back full range of motion. I have been using a vitamin E stick on my scars and they are improving every day. I hope that some of this info will help anyone getting ready for surgery no matter which kind you choose.0 -
i went in march 1 for diep. it appeared successful. next day it was evident that there was a problem with the left flap with blood pooling. second surgery was march 3 to remove a hematoma. after couple of days, blood was accumulating again. blood going into the flap, not out. the dr used leech therapy (2 leeches as often as every 2 hours) for a week and it saved the flap. the leeches removed the blood and allowed the perforators in the flap to form pathways allowing the return flow of blood. the flap was deep purple and there was no doppler sound. after 5 days, it began to turn pinkish and there was doppler feedback. so i ended up in hospital 13 days, 12 blood transfusions. very tired emotionally and physically. left flap is still very swollen and there are hard areas. another surgery is needed in a couple of weeks on that flap. right flap and abdomen have been fine.
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Thank you all for sharing your stories, it is appreciated!
As I am awaiting to see if I have a 2nd BC or not I am once again investigating the DIEP. I am 56 and hope that I can withstand the surgery. I met with Dr. Allen 2 years ago and have been approved except he told me maybe SIEA vs DIEP because of appendectomy. I wish everyone would say who did their surgeries though
when you go to the NOLA site you know but not necessarily on any of the other DIEP sites.Linda
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My bilateral DIEP was done by Dr. Chang at Mercy in Baltimore. I was very pleased with my experience there and would recommend Dr. Chang wholeheartedly.
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Anna, kcshreve had her surgery in New Orleans, and I think Dr. Sullivan was her primary. He and Dr. DellaCroce routinely do bilateral DIEP in 4-6 hours. They''ve performed thousands of flap reconstructions, and probably could do it in their sleep! The care in NOLA is exemplary and I've never heard of any of their patients consulting another doctor due to not being satisfied. I can't say that for any other of the surgeons out there, whose unhappy patients often end up seeking help from Drs. DellaCroce and Sullivan--they spend half their time fixing up botched reconstructions.
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Wow, Marxi, that was a lot of things you had to go through. I wish you a good, smooth surgery in two weeks for your left flap. I wish the rest of your recovery is speedy and eventless! Most of all, I wish you the best health physically and emotionally!
Take care,
Bella
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Thanks, Bella, it was pretty horrific at the time as I was sooo sick. I'm looking forward to full recovery.
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I am 100% happy with my DIEP!
What I wasn't told?
That I would wake up and be put in an 80F ICU room for 2 full days with a bear hugger (sort of like an inflatable mattress with warm air in it) over my chest to keep the blood supply going to my flaps. That was the most miserable I ever was. Give me surgery pain anyday over that!That when I was told I would be in the hospital for 7 days I laughed it off thinking, "no way, I'm stronger than that, I'll get out of there sooner" Nope, I wasn't. I was there 3 days in ICU and 4 days in a regular room
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nora_az - i was so happy to hear that my plastic surgeon does not do the warm room and bear hugger inflatable mattress with warm air after surgery any more. I had the bear hugger thing on before surgery but not after at all. I could never have made it through the room being any warmer and having that on. I think my room was about 73 degrees and I was pretty comfortable. I was uncomfortable enough without having to worry about being too hot all the time. I am glad you made it through that though.0
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I had no bear hugger, but the room was 80 degrees for the first 2 solid days. It definitely kept visitors to a minimum and visits short!
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I had my breast flaps covered with a few layers for warmth, but no extra-warm room or heat covers. Thank goodness. I wonder just how common that is? I know they don't do it in Charleston or NOLA...
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Just words of wisdom.....if you do end up having to have the bear hugger and/or the room warm do what I did and beg for ice packs. I had one on each leg and one behind my neck. It really helped a lot.
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I drank lots of ice water, but kept my new flap all tucked in under extra blankies too.
Did anyone else find that their mouth went COMPLETELY dry when they had to get up & go to the bathroom? It's not like the pain of moving was that intense of anything that I recall, I mean you're sore, of course, but when I would get back into bed I would need to drink lots of water. Is that the drugs, or the pain, or the exertion, or just me? It was weird.
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Xmas,
I dont recall that part. I do recall when I stood up the extreme pressure to my breasts though. I dont recall much pain at all when I was laying down not moving but when I stood up, especially that first time....OUCH! It was very painful. I had a pain pump and the nurse made sure I pressed the button right before I stood up.
Also, when they moved me from ICU to a normal room there was one nurse that followed me to help. I was trying to help out a bit moving from one bed to another and that nurse moved me too fast. Tears welted up in my eyes and I started crying. I looked over and she was gone. My husband said someone quickly escorted her out of the room. Another nurse turned to my husband and said, "Out of three days that is the first time we saw your wife cry!!" I was not impressed!
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nora_az - sorry about your move from ICU experience. I stayed in the same room the entire 4 days I was there but was treated like I was in ICU for the first day or 2. Flap and vitals checked every hour for the first probably 48 hours, bladder cath in for the same. I was extremely excited to be able to pee on my own when the cath came out, as I normally have a problem doing that after having general anesthesia but I guess 2 days was long enough to be able to go. Also so happy when I had a bowel movement also, the things that make us happy LOL.
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