2018 DIEP Surgery
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Hello Ladies!
Just wanted to check in. I'm recovering well and have had no issues. Netflix is my bestie. 🙂
I have found that my drainage output is in direct correlation with my activity level. If I veg out on the recliner all day my output is about 25ml, but if I move around it's closer to 40ml. I'm hopeful, but not confident that my last drain will come out on Wed
I've noticed that my nipple looks scabbed over. The skin on my areola seems to be shedding-- darker skin sloughing off and the normal colored skin coming through, but the nipple itself is very hard and crusty. I just wanted to ask of anyone else has had this because I'm afraid of losing the nipple. I had a reduction/ lift/lumpectomy back in April so that the nipple could be repositioned and the blood flow established before my umx/recon to minimize chance of nipple loss.
Also my new boob feels lumpy and hard in some spots. I'm sure there are seromas that haven't been reabsorbed yet and that any lumpiness will be addressed in Phase II. Just wanted to share in case any of this doesn't seem normal to you ladies who have already been through this, and in case it helps anyone who isn't here yet.
Thank you all for your encouragement and support.
Happy healing!
Cev20
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Thank you all for taking the time to keep us pre-surgery girls up to date on how you are all doing, it will help us better prepare! Still hoping to have my surgery July 31, in NOLO....getting anxious,I guess that is normal! Be well everyone!
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Caffeine causes blood vessels to construct reducing blood flow to the newly transferred tissue that needs plenty of blood flow to survive. That’s why no caffeine or smoking for that matter. Heat helps dilate blood vessels so that’s why the warm room and hot air blower.
Leatherette-I found that putting a thin pillow behind the small of my back helped tremendously with the back pain. And keeping those pillows under my knees.
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I'm continuing to read the posts here and just want to thank everyone for your pre- and post-surgery posts. I'm still scheduled for September 10. I'm having a lot of thoughts about this surgery. After going through the BMX, 20 weeks of chemo, 35 rounds of radiation, I finally am feeling somewhat normal. (Though with the AI I take - not sure I'll ever feel really normal). This surgery seems like a date that pulls me back into the haze of 2017. I am trying to view it as positive but I'll be honest, I'm dreading it. At least knowing it's manageable - thanks to all of your contributions - I know I can get through it.
Anyway - just wanted to say thanks!
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Shellybeans,
your cancer and treatment have been more invasive than mine was but I did want to respond to your worry of being back in the 2017 haze. My recovery from DIEP was easier than my recovery from mastectomy. Possibly because by the time I got to DIEP I had gone through more medical procedures and surgeries in the previous 18 months than in the 56 years prior. Don't worry about recovery from DIEP - focus on the return to a life that involves a pill a day and some tests/monitoring a few times a year vs regular invasive treatments such as what you've been dealing with over the past 18 months.
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Yes, caffeine causes veins to constrict. The heat helps them dilate.
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How long must you avoid caffeine and coffee?
I second runrcrb, so far for me this surgery was easier than BMX
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I would guess that those of us that had our MX prior to our DEIP are probably overall having an easier upper body recovery. I didn't lose range of motion again and am only limited about 15% this time. I never had a chocolate restriction but cut it out prior just becuase I cut all sugars. My instructions were no caffeine two (or three? I can't remember!) weeks prior and it could be resumed 3rd to 4th week. Start weaning yourself off with tea to make it easier cause the no coffee headaches were terrible for me.
I thought I was having a walk in the park recovery because I was getting up and down by myself quickly, I had all drains removed by day 12, my scars were healing quickly, I was walking half a mile day six, and now I have just sort of plateaued. I am not one of the ones that woke up to soft natural looking breast. I woke up to shape of my gastly expander that I had chosen not to fill up all the way because I didn't want to be two sizes bigger than my native side. Now at 5 1/2 weeks post-op, my right fllap (stacked DIEP) has way more firm/hard spots than soft spots and my poor abdomen is either 50% numb or tight or both. I'm up to walking three miles a day and have not seen any improvements to my abdomen. It's terrifying for someone who's happiness is playing outdoors. I started PT and massage and massage and massage. I just pray I'm not part of my surgeon's 0.7% failure rate because of my thinness. Sorry to be a bit melodramatic but this recovery bites!
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Parachutes, you are doing great in your recovery! The lumpiness you fell in your reconstructed breast is normal. It’s not going to stay that way. At some point in the near future your PS will probably tell you to massage that breast to help loosen up the fat necrosis. Don’t do it until you are instructed to. You don’t want to damage any of the new vein and artery connections. Your new breast is a “kind of getting to know you” situation. It will loosen up and you will be pleased with the outcome. Healing is a process and it takes time. The numbness and tightness you are feeling in your abdomen is normal too. It will heal...there are layers upon layers of stitches internally so even if your scar looks good there is still a lot of healing to do internally
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Leatherette, I was wondering if using a walker would be helpful? I have one from when I had knee surgery. I also have a rollator ( a walker with wheels, a seat, and hand breaks). I was debating as to whether to bring it with me. I have not heard from anyone using one after their surgery.
OCDAmy, I think I would die if they kept my room that warm on top of having a warmer on. Let me know how you are doing. Any ideas on what to bring with me to the hospital
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hello ladies
Checking in with an update post op. This has been a long 9 days. Let me share what I have learned.
Surgery on the 29th went great. 10 hours long. Going from prep to OR to recovery room to floor room is hazy. Lots of great care.
Nurse checks were every hour - doppler, flap check, emptying drains. Then at some point every 2 hours I think after 24 or 48 hours. Then I think every 4 hours.
This is something very important that I had learned. I work at the hospital where I had my surgery. I had so many visitors and felt like I had to entertain - it was just something that I found the energy for somehow. I'm very loved and it was great.... but I realize now that I used up my resources instead of resting properly. My advice is to limit visitors and get rest. Tell your support person to be a gatekeeper and make resting a priority. And make sure your nurse is listening to your concerns and not just giving pain medications. The nurse should be calling the surgeon if things don't seem right.
I also had the misconception that I was going to get better quickly. That I was just going to be "relaxing" at home just like it was a lazy Sunday. And that if I got up and moved around I would get better... Again I overdid it.
The pain medication made me confused. I was on around the clock acetaminophen and ketorolac with hydromorphone as needed for pain. That was too strong for me and I couldn't think straight. The day I was being discharged I didn't feel right but I couldn't explain it. I felt my breast becoming engorged but I couldn't verbalize it. My pain kept increasing - more pain medication. More confusion. I was discharged. The ride home was 30 minutes - my boyfriend got me into bed and I assessed myself and knew something was wrong. I texted my surgeon and he said go straight to the emergency room. I really thought I was bleeding to death. I was rushed to the OR and my surgeons removed large hematomas.
I spent another couple of days in the hospital.
I've been home for a few days. Again - don't over do it. I had some issues with vasovagal syncope with extremely low blood pressure -- very scary. Luckily my boyfriend worked on the ambulance when he was younger and was able to handle it.
No issues with my surgery. My results look PERFECT. My belly, my breasts, my belly button. Still 2 drains but I expect them to come out tomorrow.
I've turned a corner. Still spending most of my days in bed. My kids are now here and I'm on the road to recovery. I meet with the breast surgeon this week to go over the pathology report.
I hope my post helps someone. This is a tough surgery and I'm grateful to finally be on the other side of the recovery. Please be gentle with yourselves
Hugs xoxoxo
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So it seems like most of you who had the DIEP flap procedure had it done separately from the BMX. How many had it done simultaneously? 29 days and counting and its my turn, and I am having it done all at once
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Elijahgirl, I had both procedures at once, but only on one side. Let me know if there is any insight I can share.
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Elijahgirl, the heat gets pretty bad for me and then I just take off the heat blanket for a few minutes. I brought a small bag with lotion, lip balm, brush, cell and charger, a few magazines. The nurses have given me sponge baths and provided toothbrush and paste. I packed a drain shirt I got for my BMX to wear home along with comfy pants. Pain is under control so far. I am numb below the tummy incision, I hope that goes away.
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OCDAmy - I’m so glad you are doing well!
Iforget ... did you always intend to do DIEP, or were your TEs put in for future implants? Can you tell that the TEs are out?
Lanne
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Elijahgirl- I did BMX with immediate DIEP. Glad I did it that way. I know not everyone can due to other components of their treatment. Provided you can do skin/nipple sparing mx, doing it all at once means no TEs following mx, scars that are more easily hidden vs non-skin sparing mx, and fewer surgeries overall.
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Lula73 , thanks for everything you have shared. I was initially planning to go with the nipple sparing but it is not worth the risk in keeping them, cancer is way to prominent in my family. I have had it once already and it is not happening again
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OCDAmy & cev20
Thanks for getting back to me with all your advice so happy we have this blog.
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Elijahgirl, I had BMX with immediate DIEP Flap reconstruction. I did not have nipple sparing either. I wanted it all gone. I am so glad I had the surgery. It’s not a walk in the park but it’s doable. Think of it as childbirth. You want the outcome in the end but you don’t want to go thru the labor and delivery. But when you do you are so pleased with your decision. It’s a big step in putting you back together after cancer has made a major assault on your body.
I see you are in Texas. Are you going to M.D. Anderson
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that’s a great analogy, Bella!
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Thanks everyone for the input...I had not heard about the heat and the caffeine restrictions so these are good to know ahead of time...I always like to know what's coming! Unfortunately with this disease, there are many changes to the plan, I'm trying to get better about accepting that. But, it's so good to hear from you all about what you are experiencing. Hugs and good wishes to everyone recovering right now!
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JustKeepmoving, Did you say the PS cut your abdominal muscles? Did you find out why? I am concerned about that and plan to ask my surgeon if he needs to cut mine, to abort the surgery, I really do not want to lose any stomach muscle. I did watch the video after your post and it sure seemed to me they said they do NOT cut the muscles.
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Sonia, the other kind of weird thing is how white the flap is compared to my radiated skin. He removed a ton of radiation damaged skin but there is still a little there at top and bottom, the belly skin hadn't seen the light of day for a long time so it's really white.
I get to go home today! The PS chief resident was here this morning and said I'm doing great. There is a little redness around the new belly button but she isn't concerned, just keep an eye to make sure it doesn't spread. I'm surprised they said I don't need an oral antibiotic. They are sending me home with several drugs, I'll let you all know what they are.
Every day I feel better. No bra for a while but I do need to wear the binder around my waist when I am out of bed
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Hello Ladies, I am looking to make drainage bag holders, I have the breast holders figured out but not the hip holders?? Does anyone have any ideas? I have googled and am not seeing much. I am thinking for when I am in the shower, so these tubes just hang to the floor, the hip ones? Just trying to understand the logistics. Thanks for any suggestions. Have a healing day!
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Mimi, you definitely don’t want the abdominal drains hanging to the floor. I found a lanyard (made of a rubbery substance at Ace Hardware) that is actually a cell phone holder to wear when I work in the yard or go for walks. I took the cell phone holder off and replaced it with a carribeaner. Each drain has a loop on the top which hooked on the carribeaner. All four drains were hooked on it at the same time. The drainage tubing is long enough to achieve this.
This was a simple solution
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Mimi, I just safety pinned all four drains to a lanyard around my neck. They leave them long enough for options. It would hurt if they just hung.
Lol, just read Bella's reply, ditto:)
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hello
Regarding cutting of the muscles -- this is not like a true abdominal surgery where the abdominal muscles are being cut. The surgeon cuts the abdominal fascia and also makes tiny incisions in parts of the abdominal muscle in order to find and take out the DIEP flap. This is unlike the TRAM flap where muscle is actually cut away and brought over in the flap.
When I posted earlier about the surgeon cutting my abdominal muscles I was delirious on pain medication and upset about not being able to move around normally. I'm athletic and very active. My surgeon took great care to stitch up my abdomen tightly and repaired my diastasis recti (very happy about that!). I expect to regain and even have improved abdominal/core strength and function. I found a great video that shows the surgery - but it's graphic so not sure if you want to see it. Let me know - I can post a link.
If I remember correctly Carmstr835 I think you will be alone after about a week of recovery. My time line is I needed people for about a week. Id give yourself at least this much time requiring a companion. I'm 10 days out now and feeling good. If at this long you just had someone checking in on you and making you food and cleaning up you should be ok (using myself as a reference - and I had a second surgery on day 3).
My daughter made me a cute bag to hold my drains! She found a YouTube video (I'll look for the link - but it's very basic). Most times I had the bags pinned to a loop made by the rubbery material nurses used to make a tournequette -- that was perfect.
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Thanks Bella, great idea. I am traveling for the surgery and this might be the best way to travel with them as well!
Thanks, have a good one....working in the garden....WOW I hope I can do that!
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Thanks for responding Keepmovin, sounds like you are doing great ! I will be in NOLO for 10 days so I should be in pretty good shape when I get home. I will look for the video on your surgery and the drain bags!
Thanks again!
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They gave me a long thick ribbon for the shower and I can pin the drains to the ribbon. The tubes that lead to the bulb are pretty long. Just don't pin them to your pants and forget they are there when you pull down your pants, ouch! I was given the abdominal binder today and told to wear it all the time but can take it off when I sleep. No bra which is great.
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