DIEP 2013

Wow, Shechirple.  Not too much info at all.  You sound like me when I get mad.  They always have a hard time getting blood out of me, and when the blood person comes I give them one chance.  When they fail and I sent them away the mood around my room always changes, sorry, but I will only be stuck once!

Why the hot rooms after surgery?  Is there a reason for that?  I was told they keep hospitals really cold to keep the possiblity of infections growing down. 

Well except for lousy care in the hospital, you are doing okay.  Hang in there.  Keep us posted.

nihahi I wore my compression for four weeks and then was told by doctor to take it off. I was going to taper off but just stopped wearing rather quickly. Its now 3 months post and I am getting back to work slowly. I get tired easily and feel very fat these days. None of my pants fit around the waist!! My tummy is not as flat as after surgery. The franken boobs are fine but left side where radiation was done is harder ,lumpy and gets sore at times. I see my PS mid June. I must say though, that I have been lucky with no complications, no infections, or blisters. 

Shechirpie - you really, really need to give your doc the details. Nurses can cause flap failure by not knowing about the surgery, by moving you improperly, by not being familiar with the equipment. It has happened. Your PS can and should train hospital staff and have staff directly assigned to his/her case. Not only is this better for the patient it also protects the doctor. So sorry you have had a nightmare hospital experience!



Re the pubic boob - after you have healed completely they can laser the hair off. The PS should do that for free, but . . .

SheChirpie - I'm sorry about your hospital experience, but I am so proud of you for standing up for yourself. I think it is often hard to stand up for yourself when you are in such a vulnerable situation. I love your wording "psychological torture." I feel like that is what is going on with the insurance game and the hospital I plan to use for surgery.

Shechirple...you are absolutely right, that on this place we should feel safe to post both the "good and the bad". It sounds like your challenges were with the staff, not the surgery/recovery?? I'm so sorry you had such a tough go of it "staff" wise. For sure, you need to let your PS know what you experienced. As Martyj wrote...flaps could be put in jeopardy by staff who are unaware of proper protocol or who are unskilled. Overall, I had great care, but one nurse and 1 aide were my nemesis. They were nice people, but unaware of proper protocol and the nurse was unskilled with some of the equipment. I totally get the "alarm torture"!!!! Unfortunately, I had them on the days when my tolerance was low, from constant nausea and tossing my cookies. You have to advocate for yourself....when it was shift change and one of my "angel" nurses informed me I would be having the "difficult" nurse again, I started to cry and told her my issues. Next thing I knew, I had a different team that shift, and never had her again. Pube hair on the flap? Gosh, he must have incised you reallly low...hope like marty said, it will be sorted out for you.

Sounds like home is the best medicine for many of us, glad to hear you are at the point where you can look back and see your progress.

Movie.....we are waiting anxiously for your stories!!!!!

ssla....I feel for you ladies with the added stress of insurance issues. I hope you get word soon that things are sorted out the way you want.

goldie....the "warm room" protocol is to keep the blood vessels dilated (open) to encourage good perfusion of the new flap. Sometimes, the room is kept normal temp, but warm blankets are used to keep you "glowing" with warmth.

Geralyn....sheesh...sorry you are still having issues. Are you maybe anemic???? Can you get in to see your family doc to check some things??? If you feel so down about things, maybe some "well understood" depression has latched on to you??? We can get so ramped up pre-surgery, that I bet many ladies feel quite a letdown when all the "commotion" and concerns start to fade away. I hope the appt. in June answer/sorts out the tummy/size issues for you....keep us posted. 

Sbelizabeth, you obviously have some new-found confidence, and are sooooo enjoying your femininity again - exactly the reasons why I had the surgery. Thanks for sharing - you go, girl!

Nihahi, maybe add Winners to your list of stores - I've found some nice things there for very reasonable prices in the past. Once bought a 100% wool coat there for $80. Not bad.

Wonder how long before all the swelling disappears? Seems to still be a little swollen around the tummy incision, and south of there too - lol. I can now see that I have a wedge-shaped flap neatly sutured into place on my breast, and I marvel again at what these docs can do. Breast feels a bit hard and tender closest to the breastbone area, but that should soften up with time. That's also the area where I felt the TE fills the most.

Movie, come in! Or are you too tired from romping around that pool fighting off all the attention? LOL.

I bet Movie's in jail.  No internet there.

Nihahi, the shoes this morning are basic flat leather flip-flops; I didn't want to fancy up this fancy dress too much.  But they're the wrong color--I need something in white!

I don't know if our Canadian sisters have access, but I order a lot from Coldwater Creek.  Pretty stuff and pretty colors.  I don't spend much time shopping in real stores--just not enough time--but I love shopping on the internet, especially if I can get free shipping.  And the tax is always lower than shopping locally. 

I thought I would add to the funny stories about being in the hospital. When I had to be rushed back to surgery for a complication, there was a grumpy anesthesiologist who yelled, as we rounded the corner to go into OR, "don't bring her in here. I just finished a c section. You'll have to wait!" I said "well we are trying to save my flap!" Had lots of pain meds on board.

About that time Dr Kline saw him and "kindly" directed him to the other OR. Anesthesiologist was still bitching, "I've been here since 7 am, there's a law about how long we can work". To this I said (again lots of pain meds) " I need you to stop complaining and pay attention to what you're doing"

He put me out with a mask so fast, I barely had time to blink:)

I don't even wanna know what he did or said while I was out. Lol. Even good places have bad apples:)

Excellent conversation today re: experiences and "actions". You are so right......even good places have bad apples, and I'd like to add....even good apples can have bad days. The people caring for us....are people too. That being said, there is ABSOLUTELY NO EXCUSE for sloppy technique or "attitude" when we are "vulnerable" patients! One of the reasons this thread is so important to me, is to help not just us, but those who follow us.

Sooooo.......Defo, like sbelizabeth says: write the letters, inform the surgeons, talk to the nurses. TOWANDA!!!!!!!!

Okay, here is a weird question.  As some of you know I supposedly had a skin sparing mastectomy, with expander's put in, but the incision keeps failing on the left, etc.  So, now I am scheduling either for a diep, or lat.  But, that is not the point of my post.  I was told before my mastectomy that breast tissue is not just in your "breast", but under your arms, and all the way up to your clavacle bone.  So, they don't just take your breast, but pretty well scoop out all breast tissue to make sure there is no where for breast cancer to grow again. 

Okay, now that I have explained that part, here is what is happening to me a lot.  On the scale I weight about 2 pounds less than before surgery.  I have been wearing a fairly good fake set of foobies.  I don't wear anything low cut, so there needs to be no illusion of cleavage.  I went out to lunch today with a couple of friends, and then we went shopping.  When they dropped me off they said, "you look really good, but you need to put some weight back on." I have had this comment often, from my son, my daughter in law, my husband.  All clothes are fitting the same, when I have fake boobs in, and pants, and skirts are not big.  I think that the tissue they took from my chest during the mastectomy makes me look thinner on top.  The bones in my chest show very slightly, not enough to look gross.  But, I think that is what people are perceiving as thinner, but they think it is all of me. 

Kuka, my PS doesn't allow underwire bras during treatment. There are a bunch of theories around about the wires pressing and shifting things. Just something to consider. I found a wacoal bra without wires that is pretty comfy.

Liefie, I agree 100% with you about some patients being impossible to please.  I once needed to fly a man having a heart attack to the hospital and there wasn't room in the aircraft for his wife.  His wife, who impressed me as being controlling and narcissistic, said, "well, if I'm not going, HE'S not going."  !!!  We finally convinced her to allow her husband to receive the care he needed.  But even in this tangle of self-centered weirdness, I would not have felt justified in being rude or mean to her. 

As a flight nurse, I stopped flying 24-hour shifts when I realized I didn't mind flying all day but I really hoped they'd let me sleep at night.  I'd look at my paramedic partner, who could have been my son, flapping around with his radio and trauma bags, IVs loaded up in his pockets and a roll of tape swinging from his belt, and just think, "maybe he wouldn't mind carrying me to the helicopter and waking me up when we get there."  It was time to move on. 

Maybe CRS's anesthesiologist was a good apple having a bad day, but in my humble opinion, someone who provides direct patient care in such an environment doesn't have the right to inflict their bad days on their patients.  People who are having babies--are worried patients in the emergency department--about to be put on a helicopter because they're critically injured--or being wheeled into an operating room for MORE surgery in an attempt to salvage their brand-new breast--will remember those moments forever.  As a caregiver, do I want to be an unnecessary thorn in that experience, or a blessing?

Climbing down now from this soapbox. 

I think sometimes the medical profession (not PS' so much) has been hammered too by what insurance will allow them to cover. My internist has been saying to me (especially when she saw my flap) that my situation is 'above her pay grade'. Now, I've been going to Drs for a long time and never heard that from a Dr.!!! I've gotten referrals to other Drs. But not that phrase! (She used it when she dx me with Hypothyroid - then I researched and had a bunch of ??? s for her and when I started, she didn't let me get to question #2 before she said, "Oh, that is above my pay grade - you should see an Endo!" GOOD Grief- if I can be dx by you and you want me to take meds the rest of my life because of it, you should be able to tell me what T3 is! So, I see an Endo - and glad for it because it appears that it truly was above her pay grade! But I think they are getting zonked by insurance.

Sbelizabeth,

I truly had to bust out the dynamite. Never have I been in so much pain. When docs say take your colace ladies, double it!! On a different note, got my pathology back and turns out I have IDC, DCIS, and LCIS all with different features. Thank God I decided against a lumpectomy!! None of this was confirmed with imaging! One lymph node was involved, but she took 9. Not sure why so many but really not complaining at this point. I have great margins except for the elusive tumor 2 which is only 1cm so have to meet with rad onc to see if I can avoid it either with more surgery or if its good now or if he's just going to do it regardless. We should know tomorrow. So as far as I can tell I ended up a Stage 3a? Instead of Stage 2 like we thought. Been a tough day for me. Thank God the sun is shining!!

Dyvgirl. Wow, what a day! You'll be in my prayers.



Sharon