DIEP 2014

Janet_M

Shine14 - I'm one of the tight-tummy girls. The only real issue for me is that it took the skin longer to stretch the skin so you may be walking like a turtle longer then some of the other's. My PS initially told me that since I was so slender (bless his handsome little heart) I may have to go down a cupsize. In the end, my cup size stayed the same. Could be because I gained some weight (fun!) or because my PS is a genius. 

But for me it was all about the long term result, and I knew that it would be marathon rather than a sprint. There were some days of frustration, but that was temporary. There were some days were I was absolutely gleeful. It's been a year and I'm really happy with the way I feel

DeeW29

Hello everyone - Just checking in. Surgery went well,  no problems. I believe it was about 10 1/2 hours. I'm doing well.  Thanks for the prayers and well wishes!

jbdayton

DeeW great to hear the good news.  Just take it easy and let others wait on you.  It is your turn to receive all the benefits and attention.

jlbloom

Lahela, yes this was a bit more uncomfortable than I had expected.  My skin grafts were taken from the ends of the abdominal incision.  I'm four weeks post surgery so everything is feeling much better.  I hope it will go quickly for you, too.

Teacher64

LoveAMB - you are on the way. I had bp issues too, but they resolved ok.

Goldie - LiLi sounds like a delightful young lady. So glad she is doing better. I realize how blessed I am that I did not have wound issues and the cording is nearly a thing of the past.

Lahela - ouch! I will not have grafting to make nips. My PS is using the crop circles and I'm still on for July 30. Since I got such belly inflammation last week after working out, he did ask that I only walk the week prior to surgery. He doesn't want an inflammation since I will have some belly scar revision to get rid of the "rope" across the center of the incision. 

It's a beautiful day in North Texas, not as humid and a clear blue sky...my kind of day. I'm going to go out for some weed attacking therapy. Those nasty green things better be quaking in fear because they are history!

gila4936

Three weeks out. I drove for the first time today and now I'm ready for a nap! I had to see the PS unexpectedly because we found a couple small staples that hadn't been removed and needed to be. They weren't doing anything - they were just there as markers. But while I was there I had him check out the hole in my stomach incision to make sure it's healing as it should be. He said the good news is that it will heal, the bad news is that it takes time.

optimi

Dee, Lahela, good to hear from you. Glad you are doing well! I wish you have a speedy recovery. Sammyrock, thinking of you, hope surgery went very well without any complications. 

Goldie, so happy to hear about your niece doing so well!! Where in Germany is she? (I am from Germany, Heidelberg). I am continuing to keep her in my prayers. May she continue to heal well!

I have a question to you ladies. How soon after surgery did you start driving? I am 2wks out and feeling pretty good. I would love to get out a bit more. Besides, my 3yr old is starting to bounce off the walls (so am I really, LOL). I'd love to drop her off to daycare where she'd have a bit more fun than at home and where she would get a chance to release some of that energy.

Healing thoughts and prayers to all recovering!

trish01254

Optimi,

Just left my first post-op PS visit.  Had 2 of 4 drains removed one from ab and one from underarm.  Nurse said I can drive after all drains out and no meds.  She said once ready, practice in a large parking lot first to check reflexes just to be on safe side.  Sounds like good advice especially if driving precious cargo. 

Loaded up on the pain meds for this visit since I was scared about the drain removals.  Wasnt as bad as I worked myself up about.  Next time will be a breeze.  No time for nice long nap.

Trish

 

Donna2012

RE: tight tummy.....   I was pulled super tight!  I read about how I may be hunched over, but I never dreamed it would be to the extent it was.  I was not able to walk upright for 6 weeks.  I am now 5 mos out & feel great!  I can do any kind of exercise & am in better shape now than I was before.  If I stretch my arms way up & arch my back, I can feel the tightness in my stomach - the skin is probably too tight to do a back bend, but I don't want to - so it doesn't matter.  Being pulled so tight gave me a totally flat stomach, which I love now.  I would definitely recommend PT - it really helped me gain strength & mobility so I am 100% now.  I think if I would have returned to the gym before going to PT, I would have done damage to my body.  To all those recovering - have patience, it takes time...  

gila4936

I was walking upright from the first time I got out of bed. I wonder if that's why my incision opened up?

naiviv

Hello all..

Goldie, sending healing prayers to your niece and family. It is so hard to have a child in the hospital.

LisaLou,

I am very sorry and I do know how you feel. Tomorrow is 5 weeks for me post diep and I lost my left flap. Both were done and I got to see two mounds on my chest as they were waking me in recovery, then I remember waking in the operating room and they were telling me it was over. I was confused not realizing I was taken back to surgery and the left was removed. I was devestated, told everyone to leave me alone and cried. I knew and was as ready as I could be for their loss at the mastectomy, but I was suppose to get them back during this reconstruction. My PS is also very good, and my family tells me he had tears in his eyes when he told them of the failure. And at every appt he has told me, he will fix it, he will find  a way and he did make a suggestion, a lat flap with an implant,but I have not been ready to listen.

In my mind was how could they not have known?, why aren't there test to check for venous reception? I see a right mound that is hard for me to relate to as my breast, because I am just beginning to have the energy to explore what is next. And the ladies here have been very helpful. JB with her research and Gale sharing her exp with me.

When I see him again. I am ready with questions. I need to know if he tried my internal mammary artery, I want to find out if there is another in the arm, can they graft any of the veins? If they pedicle a lat flap with it's own blood supply, can you attach a flap to that.

I want my 2 breasts and I want to try for a close as I can to a matching set.  I don't want one implant and one real tissue if I can avoid it.  It took me 5 weeks to get my strenght back.

You need to heal, you need to mourn their loss and when you are ready...then you plan what is next. I am here a few weeks ahead of you, please feel free to PM if you ever need to talk/vent.

Healing thought and prayers to all,

Vivian

brendarj

Goldie - What am amazing brave young women your Lili is

I was well prepared for the surgery, the hospital stay and the recoup at home. What I was totally unprepared for was that at 21 days post -op I would still require daily nursing  due to tunnelling and yesterday ab incision started to open and ooze out a bunch of stuff plus on again off again low grade temp. So here I sit packed, bandaged and oozing. Off to GP tomorrow and PS next week. But for now baby steps and rest. Gentle healing to all

Meow13

Two years later and my DIEP is getting better all the time. So glad I did it.

goldie4040

Optomi, she is in Munich.  We here the hospitals are good in Germany. Do you have any experience with them, and how do you feel about the medical community there?

Donna, it sounds like they did us both very similar.  At 6 weeks I was upright, to the naked eye, but I knew I wasn't and am still not 100 percent.  My posture is off.  It will be a while longer.  I am at 7 weeks.  I walked Kohls and Target today.  Carried my own packages, and I am now sitting at the office desk instead of heading directly back to my recliner, so I am doing better.  The one lucky thing you didn't have to deal with,  I  unfortunately do, is a wound that won't close because of the tightness. But, I am dealing.  I can't wait to stand up straight and not think about it.

Brenda, I am sorry about the ab incision.  It is a little bit of a set back. I know when mine started to weep I got really scared, and sat still for a long time trying to prevent it from getting worse.  Try to keep moving a little bit every hour.  Just get up and walk to the kitchen and back.  Anything.  I was like a weak little kitten after sitting still for so long.  I saw a medical show once about what happens to the body at zero gravity, and how bad it is for your bones. They simulated it by taking a man and putting him to bed for several weeks, I believe, or it could have been longer.  He was not allowed to do anything for himself.  Not even get up to go to the bathroom.  At the end of that time he had huge bone density loss.  I remember them saying they paid him $2000 dollars to do the study.  Uh, not worth it!!!!  So, I guess what I am trying to say is, move a bit even if you are afraid to. 

Thanks to everybody sending prayers to Lili.  They started a Caring Bridge link for her if anybody is interested.  I was going to post a cartoon, or joke a day for her on there, but it won't let me.  Ugh. 

Zenful

Vivian, have you considered NOLA?  They may be able to find fat on other areas of your body if you end up having an alternate vessel that is viable. You could send them a picture and ask their opinion with your specific questions. 

aff

Goldie - I continue to keep Lili and your family in my thoughts and prayers. She sounds like one heck of a fighter. 

Morningsun1

brendarj with oozing and low grade temp, you may have a low-grade infection. You may want to ask your GP to do a culture of the fluid coming out of the opening tomorrow. To either rule infection or to give the doc a better idea of what antibiotic to prescribe. I've had an infection next to my belly button incision once for which I did not even have a temp. The culture showed that the antibiotic prescribed was not very effective and doc switched to a different one and it cleared the infection very quickly.

TinaHoff

Goldie - sounds like Lili takes after her beautiful auntie.

naiviv

Zenful,

After my next ps appt and I know what veins he used. I will consider Nola. But leaving state for any amount of time probably won't be practical til next summer when kids out of school. That just seems too far away. But I've gone to website and know how to send things. I have plenty of areas to take a flap from. 

My ps is very good.  I have seen a lot of his work and it is beautiful. I don't blame him. I had one infection after another on that side.

He does different flaps. I have seen his work on patients that I have become friendly with. 

For now I continue to heal and begin to research what can possibly come next.

Thanks,

V

Zenful

Vivian, it sounds like you still have options, which was my hope for you. Good luck, dear. Keep us updated.  

brendarj

Thanks Goldie - I do try and make sure I get up and walk a bit at least every hour but you just gave better incentive

Morningsun I am on topical and oral antibiotic now but maybe they are not the right one for what my body is fighting. I will question that tomorrow

I did get the best medicine today. Our son who lives on the west coast (about a five hour flight) came home for a visit. It was absolutely the best medicine. We don't get to visit a lot in person,

A friend asked the other day considering all that's going on right now would I still have this done. My answer was without hesitation YES!!

 

naiviv

Hello all....

I have a bunch of white stiches poking through incision line along the flap. Incision seems to be staying closed. Except one small area where breast meets chest , I see a little opening and some white inside and also a stitch. It's amazing what our bodies reject. My hip incision didn't like the little white staples that were also suppose to dissolve and pushed them all to surface again most areas closed immediately around them except for two small ones that have scabbed over.

Has anyone else had the stitches poking through? What have you done?

Vivian

Kat-ski

Copied and pasted from "Moving on".  Sorry I had to do it because it is late.  Time for bed.

Hey Sisters!!   I have been reading but not posting.

'Well,
I am home from that little jaunt in the hospital for blood clots in the
chest and right lung. Good grief, what's next? I know, I know: Stage
2a in Chicago, October 14th with Dr. Massey!! First, I will be on
xarelto for the rest of my life. I do hope the doctors have that
undercontrol now! The doctors said the clot was pretty massive in my
chest and in my right lung. When they brought me to the room, the
nurses could not believe I was talking away a storm!! My mom always
told me I was born talking, lol! I was on heparin for five days then
sent home on xarelto. I have been feeling okay at home and have been
getting out of the house.. We went to the lawyer to redo our wills(had
an appt. before all of the above). Our current will is from 1986 before
we went to live in Australia. We did a trust and it is very simple but
still costly to do. We don't have much but the trust had to be done.
(My other dad did this and it was just nice to let the trustee do what
she needed to do and then disperse his remaining assets.)

I
can't wait to get the second stage going on my "blobs"! I am a bit
concerned that Dr. Massey might decline but she also said she like
challenges so here I am!! lol. Becky (her assistant) has been keeping
in touch and that makes me happy. We have to stay for a week in
Chicago, so if anyone has any suggestions, please.

My daughter
with her two toddlers and two cats are still coming in August. I need
prayers for patience of toddlers. The rearranging of the house hasn't
happened as we seem to busy with my crazy happenings!! I don't know how
I am going to get use to the "noise" again. I know it is happy sounds
but to have it all of sudden is pretty scarey!! It doesn't help that my
daughter is OCD!! One moment at a time!!

My roses waited to
blossom until I came home last week Monday!! They are open faced now
and will be dropping their petals soon. The wildflowers seeds I planted
in a huge flower pot last year are beginning to grow!! I am glad I get
to see my flowers blossom.'

I pray for everyone of you.  Goldie extra prayers for your niece!  Kat

goldie4040

naiviv, leave anything that pokes through alone till you see the doc.  All normal stuff, but don't pull on anything yourself.  I talked to a lady last week that wanted her tape off her breast so badly she pulled it off herself.  Well, some skin came with it!!!  Patience!!!!  

Brenda, I wonder if our kids have any idea how much there presence means to us?  Mine has two boys of his own, but they are still dependent on him, and think he hung the moon.  One day when I am long gone my son will get it, just like I got it after my parents were gone.  The cycle of life. I am glad your boy is there with you.  The best medicine of all.

Donna2012

naiviv,

I had a few white stitches come up to the surface & not dissolve.  They seemed to be mostly where the knots in the stitching were (on the abdominal & breast incisions).  The little ball of stitches were right under the skin & the area around it was slightly red.  It looked just like a small white head pimple.  My incisions were completely healed so I just squeezed them & they popped thru the skin.  Within a day or 2 the redness went away & the skin healed.  Now, I am not suggesting that you do this - I don't know what your exact situation is.....  I am just telling you what worked for me!

lemon68

naiviv- I also have some clear stitched that haven't dissolved in my incisions. I have left them alone. But my BB is healed and there is a long ------------ about that long or there was thread hanging out. I didn't pull it I just snipped it with a little pair of cosmetic scissors. I agree with Donna they seem to be the knots. I had more but they have slowly disappeared. I use Aveeno all natural lotion on my new girls and I think that is helping to dissolve them.

Kat ski- It is great to see you posting and feeling better! I am glad your flowers waited for you to arrive home. I am sure you will enjoy the visit, if you need time maybe your DD can take the kids out somewhere for some fun. All the best to you.

Brenda great medicine is right, so nice to have your son there.

Trish congrats on the drain removal, I know such a relief!

  I am having upper tummy pain. On Sunday I sat in a low chair and weeded being forward for a couple hours. Not so smart. Above my BB I feel like something was pulled or twisted, thinking its like a kink and its SO tender! I am back to having to roll out of bed Called PS and they are Fed Exing me a prescription which was really nice of them. My DH was out with our sons and I took advantage of the alone time, I don't think he will be leaving me alone again anytime soon. Lesson learned too soon.

DeeW, good to hear from you. Rest and take it easy, let us know how your doing.

J1971

Teacher64--- hang in there! My double DIEP was much more than I thought. I figured since I was young- 43- and in great physical shape going in....I would sail through. Well no complications, but nearly 4 months later and still dealing with swelling & pain with sneezes. I am getting used to the hip to hip incision---- maybe tattoo in the future! I have definite crop circles- and the new boobs look so odd without nipples. I just want to feel like my old self--- before the DIEP, before the radiation, before the mastectomy, before the diagnosis.

I never wanted perfection. Heck, they weren't perfect before cancer (thanks breastfeeding and pregnancy). I just want to wear clothes without having to think about the boobs/scar/swollen belly! 

I don't go back to PS until Sept. My job schedule won't allow Stage 2 until Oct/Nov timeframe. 

For the record...I love my new BB. Its odd that I don't feel it, but I think it is nice to look at than previous BB!

LoveAllMyBoys

Hi All –

I’ve finally caught up on all of the
posts from the past week while I was in the hospital.

Kat – you are in my prayers!!

marvelher2 – I had BMX with DIEP 8 days ago. My pectoral area isn’t spasming, but it is
very sore. I think I read somewhere on
this site that it relates to the BMX and removal of tissue in that area…and for
some folks related to shaving the ribs/bone in the medial chest. I’m sorry that you are having pain…and I am
keeping you in my thoughts!!

Aff – so glad you are doing well!!

Optimi, brendarj and pollyanna5
-- congrats on being drain free!!
My PS took out three of my four drains today (see my update below) and I
am SO much more comfortable!!

Teacher64 – sit ups??
VERY exciting!! …and thanks for
letting me know I’m not alone on the surgical bp issue. I’m feeling better, but am wondering where my
bp is now. The visiting nurse comes
again tomorrow and I’m assuming she will check. The PS’s office didn’t check
today. I know my oxygen level is better as I am using
my inspiration spirometer (that is what it is called, right?).

Also, the nurse I saw today reminded me that there are lots of
emotions that come and go with this process…and that they are all normal and
that she told me to expect good days, not so good days, anxiety driven days,
why me days, etc. She said these will
come and go and will not necessarily come when I might expect them…so you she
wanted to remind me that this is a normal part of the process…and that I should
try to accept it and roll with it. You
are ahead of me in this process, so I can’t say for sure how I will feel once I
am in your place, but I can share with you what the nurse reminded me about
earlier today.

goldie4040 – First, Lily and your family are in my
prayers. Second, a pubic hair? Is it safe to tweeze it or do you need to
wait and ask your PS? This is the first I’ve read about that possibility…oh
joy.

DeeW29 -- I got hot
pink toes just before my surgery last week and they are still in great
condition. It makes me smile when I look
at them! I hope you are doing well. I know that these are tough days this week
for you. My surgeon said that I could have both my hands and toes done, that
they measure oxygen level using more sophisticated tools now…but that I needed
to have something light and shear on my hands.
Also, gel on my fingers was ok

marvelher2 – I had awful stretch marks on my abdomen from my
pregnancies. I don’t see them at all
anymore…either on my abdomen or the sections of skin on my new breasts. But, my surgery was only last week so I am
still pretty swollen and tight. I will
keep an eye on this and keep you posted…although I’ll bet that there are others
who are further into the healing process who can share their experience.

LisaLou12 – I am sorry your DIEP didn’t go as planned. I can’t imagine how upsetting that must be
for you!!

pollyanna5 – Sorry you had a rough day, but
being able to vent is part of what this community is about!! I hope you are feeling and doing better
today! Also, re: sweating…I am finding
the same thing. My hospital room was kept
at 78 degrees by the doctors in order to increase dilation and blood flow in
the flaps. Needless to say I was
sweating a lot in the hospital, but I’ve been having that same problem at
home…and I’ve noticed that it seems to start about 45 minutes before I am due
for pain meds. I start to feel more pain
and for some reason that impacts my body temp.
It doesn’t help with the actual sweating factor, but it seems to help me
mentally to have put that together. I also
have been keeping cool washcloths available for the back of my neck and
forehead. That seems to help a
little.

Shine14 – I’m sorry that you are having to join this group,
but I am sure that you will find information and support here.  I lurked for a while before I joined as well.  I think it was part of my acceptance process…although I still haven't fully accepted that I have breast cancer.  

lemon68 – I hope the new meds work for you. I was actually thinking about trying to do
some weeding now that I’m home, but your note is a good reminder that my body
probably isn’t up to doing that yet.

I hope I didn't miss anyone.

…and now my update…Had my follow-up
with my PS today. He said things look
good and he took three of my four drains out.
I have only the left hip drain left.
I now have permission to shave my underarms starting in three
days!! As for the remaining drain, he said I need to track how much fluid it
collects and when I have two consecutive 24 hour periods where the output is
less than 30 mls, then I can come in and they will take it out…and that is when
he will give me my abdominal binder.
Now that the top drains are out, I need to buy a few of those bras you
were all talking about. I know someone
posted a link or the name of the bra at Walmart…and I am hoping I can re-search
for that post.

I also have a few questions for all of
you…

• 1.How long did it take for the surgical
  glue on the incisions to start to come off?
  The nurse told me it would start to come off over time and that is
  normal, but I didn’t ask when that would start to happen.
• 2.How long will it take for me to be
  able to stand up straight? I am
  straighter than I had expected at this point, but by the end of the day or
  after a short walk I’m hunching over…because of the pain/pressure/pulling in my
  abdomen.
• 3.How long does the swelly belly usually
  last? My PS told me that once the last
  drain comes out he will give me a compression binder to wear. I’m sure it varies, but it would be helpful
  to have a range of weeks/months just so that I can start to adjust to that as
  part of my upcoming healing process. I
  know that I am pretty swollen now…
• 4.Several of you have mentioned
  something about skin tails or dog ears (I think that is what you called them)
  which were left after Phase 1 but fixed in either Phase 2 or 3. Where would those be? If is possible that I don’t have those?
• 5.How can you tell what your new foob
  size is? Mine are definitely smaller
  than they were before (I was a 34G before so its good that they are
  smaller)…but I’m trying to figure out what size sports bra to get…and am
  starting to think about pretty bras for somewhere down the road…and I have no
  idea how to tell my new size.

Re: my BB – Mine absolutely looks
higher than it was before…and it is stretched out…looks sort of oval rather
than round…and although it still looks like it might be an innie, it not quite
as deep as it was before. I didn’t ask
my PS about it…but I know that everything is pulling and stretched and swollen
right now.

One last
question…

Do most of
you sleep through the night? I take
little naps…but I’m not sleeping through the night (which is why I am posting
so early in the morning). If this is a
normal part of the process, how long did it take folks to get back into a
regular sleeping schedule? I know my
recliner will be my “bed” for the next several weeks, but I’m hoping that I can
settle into a sleep schedule.

Thanks
All!!

trish01254

welcome home LoveAllMyboys.  I'm 5 days ahead of you.  I slept thru the night for the first time 2 nights ago but was up again last night.  I think the pain and having to pee has been waking me up.  Pain is much more manageable but the waking up to pee is due more to the amounts of water I am consuming.  Maybe I need to stop drinking by 6 p.m.  I have stretchmarks too on belly from my 3 boys.  They are still there and now are also on my new boob.  Lovely.  Adds texture?  I still have 2 drains even though their output was less than 20 for more than 3 days prior to PS visit.  Very disappointed they weren't pulled out but better draining out than in.  Hopefully Friday.  Walking as much as I can and feel almost upright.  The walking is at a very slow pace though.  DH usually needs to hold the doggie leashes while I lag behind.  I can load and empty dishwasher, make the bed and have done some cooking.  No weeding the garden except for an occassional easy squat/pull.  Laundry is downstairs so DH is left to do that.  I help fold if he brings upstairs. 

Happy healing everyone.

 

MartyJ

Love, sounds like you are doing well and are right on target.

1 - glue begins to come off at about 3 weeks.  Don't rush it as it supports the incision.  I would clip ends as they popped up.

2 - standing up straight is totally personal, some of us do it faster than others.  Just don't let it frustrate you.  You need to be in that position to protect all of the internal and external work.  Forcing yourself to stand straight will usually backfire on you.

3 - Swelly belly can last for months - comes and goes.  Fluids must seek new pathways following the big abdominal surgery.  I am 18 months out and it can still happen on occasion.

4 - Dog ears are pointy peaks that stick out from the ends of the incision (frequently the abdomen, but can be at the breast depending on the cut).  They aren't bothersome, but they are a bit less than attractive.  They are easily fixed at Stage 2.  If you had your drains at the ends of your ab incision they are most likely to happen. If the drains were in the pubic area, then you may miss the opportunity.  I didn't notice mine until about 4 weeks out.

5 - Did your PS tell you to get a sports bra?  Often they prefer you don't use one as they usually compress.  Some docs want compression on the new boobs and others shun it totally.  I wore the soft hook front bra from the hospital then switched to a Bali Comfort Revolution 103J (only about $10) and a Coobie.  Now I wear the Anita Athletic 5521sports bra because it is engineered beautifully.  Doesn't compress, but holds the girls in place.  When you get to the point that your new girls are less swollen (maybe 4 - 5 weeks out), then measure around your ribcage and around the breasts.  There are bra size calculators at places like herroom.com.