DIEP 2011

Melster,

Here is a list I compiled from various lists posted on these threads. Some items have my notes about my experience with an item or a to-do.  Experiences, needs, and surgeons are so different, that I'm sure lots of women will chime in with yes/no/try-this-instead suggestions to augment or change the list, which will give you lots of different ideas.  Good luck in your preparations!  --Carol

For the house:
Get several plain white 100% cotton T-shirts (wear these cut up the middle...helps absorb leaking and protects the scars, and you can pin the drains to them). (I wore these for the first ten days around the house, closing the front with safety pins.  Safety-pin chic!  I put my button-down shirts over them when being seen in public.)

Get some zip-up-the-front or wrap-in-front nightgowns, nightshirts, or robes. You won't be able to pull a shirt on over your head for several weeks, so anything you can put on through your arms is best.

Fleet enema, just in case things get backed up despite pre-surgery colace and drinking lots of water

Shelf bra camisole, easy to step into, to wear for some support. (I found these to be great for holding gauze in place. My PS suggested going very light on tape to hold gauze, and the shelf bra seemed to do great helping to keep the gauze in place with just the tiniest corner of paper tape on the gauze.)

Tie a rope to bed for something to grab onto to help in and out (I didn't need b/c I was in a recliner, but I can see why this would be a good idea if sleeping in bed early on)

Put in a hand shower with a second, lower hook and get a shower seat.

A way to hang drains while showering (lanyard, ribbon, even old nylon panties with crotch cut out to form a circle are some ideas)

Spanx for some support when PS gives green light; helps with swelling. (From what I read, some PSs put their patients in serious compression garments; mine did not.)

U-shaped neck pillow (airplane pillow)-(This really helped me sleep in that recliner!  I also used it in the hospital bed, and it helped me rest there, too)

Sterile gauze, paper tape

Antibacterial foam for stripping drains at home

Sterile gloves for helpers with drains and dressings

Tylenol extra strength pm for when you go off the prescribed pain meds

Benadryl in case of nausea, 25 or 50 mg

Trash can next to bed

Note cards, pen, stamps, so you can write thank-you notes to all your friends and family who will send you flowers and goodies to cheer you up!
 
Things to do before surgery
Start taking Colace two days before surgery and drink tons of water before and after surgery to help prevent constipation. Eat lightly day before surgery because bowels shut down for a few days.

Ask PS about coffee and other caffeine, and if the answer is 'none' then wean off it ahead of time so you don't add headaches to your body aches after surgery.

If you plan to sleep anywhere but your bed (such as recliner) give it a dry run for one or two nights, so you can figure out what you need to be comfortable. (I planned to use (and did use) a recliner and my dry run nights made me realize I wanted a U-shaped pillow, and I also had to work a bit to find a way to get some sheets and blankets to stay where I wanted them. Of course I still needed to fiddle with pillows, position, etc. to get comfortable once home, but mostly I had figured out what I needed and how I was going to reach it, before the surgery.)

To bring to the hospital:
Lip balm; your lips may be quite dry after surgery.

Body wipes and/or Olay facial wipes for when you feel icky but can't yet bathe

Wisp waterless toothbrushes so you can clean your teeth without help

Phone charger with extension cord

Slip on shoes to walk in

Ear plugs

Throat lozenges for hospital (and I wanted them at home, too, because it hurt to cough for a few days)

Big thick beach towel to fold and put under seatbelt and harness in car. (I found this worked better than pillows, because I could make it thick where I wanted it without feeling like I was under a couple of marshmallows. I had a 3-hour ride home from the hospital, so this mattered a lot to me.)

Spiral notebook with attached pen to write things down in the hospital, and once home, to track pill timing and to write down questions for the surgeon (cannot stress that one enough)

Here's a question for anyone who's tech-savvy: these kinds of lists get buried in the threads, so I wonder: Is it possible to put some of them up on google docs with permanent open access to anyone to edit?  I have not tried group collaboration using google docs and I don't know what the practical limits are on time or number of people who can access. Is there a way--google or otherwise--to put collaborative documents 'out there' so the wheel is not constantly being reinvented and the suggestion lists are easy to find?  Moderators, any ideas, perhaps some kind of perma-link to or special keyword that can be attached to how-to-prepare docs, whether for recon surgery, first-time chemo, etc.?

It's just a start, Melster. There are so many creative women in this forum who can give you more to think about. Lots of women have written about ways they have worked with pillows and wedges for staying in their own bed, for example.  I hope someone will come along and re-post about that for you.  One more thing to plan to do:  Keep your optimism!  Surgery is hard for a few days and then gets noticeably better pretty fast.  Good luck!

MY LISTS OF STUFF NEEDED/NOT NEEDED

My hospital provided: hairbrush/comb/toothbrush/toothpaste, slipper sox, face wipes, talcum powder, large safety pins for drains, dressing supplies and antibiotic ointment to take home

My top five for hospital (in order of preference): #1 sleep eye mask, #2 smartphone & ear buds for music playlists, #3 lightweight robe for walking the hallway, #4 lip balm, #5 mini fanny pack to clip to bedrail to stow phone, lip balm, eyemask within easy reach.

Didn't need: hard candy for throat (didn't have sore throat), books, magazines, anything the hospital already provided (listed above), granny panties, nightgown/pjs or wifebeaters.

After hospital: pillow for car ride, digital thermometer, Oxyclean for stains, yoga pants with roll-down waistband, zip-up lightweight hoodies, tank tops I already had, lanyard to hold drains in shower, step-in sundresses, slip-on flat shoes, Spanx thigh tummy shaper, Colace & Dulcolax for constipation, extra dressing supplies, stick on maxi thin pads to protect clothes from stains, big-ass recliner nest souped up with comforter padding & pillows, clipboard with pen & paper to keep track of pain meds, etc., portable phone with intercom feature to 'page' my DH if I needed assistance when he was downstairs or outside.

I wore lounge/yoga/pajama pants with tank tops and zip-up hoodies or pull-on sundresses. I had no trouble getting tank tops over my head or stepping into them and pulling up. Did not buy or wear any big button down shirts or wifebeaters.

Hope this helps. I'm getting to be a pro at this with my 4th surgery Stage 2B coming up. Best wishes to everyone for a smooth surgery and quick 'n easy recovery.

Is anyone having surgery 9th jan???

Melster and redninrah,

Something else to think about on the question of button-down vs. over-the-head garments. If your diep is being combined as immediate reconstruction with mastectomy and IF you are having any lymph nodes removed (even if just sentinel node, which can be more than one node), talk with your breast surgeon in advance about advisability of lifting arms above shoulder level for two weeks. If nodes are removed, it is considered a good precaution to keep the arm low, to help limit your risk of developing lymphedema in the arm and/or trunk on that side. 

If BS doesn't seem to know why this might be true, please PM me and I'll send you a study, provided to me by an instructor at one of the lymphedema therapist schools, that shows why it's best to keep those arms down. So even if you find you CAN get into an over-the-head garment, if nodes are coming out, it might be caution well worth taking to keep the arms down anyway.

I think that most plastic surgeons are asking to keep those arms down to protect the flap's blood supply, but from these threads it seems that like many other aspects of post-surgical care, the PSs are not uniform in what they have us do.  My BS never breathed a word about lymphedema risk but my PS made sure I kept the arms down.  I do have LE after having SNB with my surgery, but it is very mild, easily controlled, and I always wonder if my PS's insistence on arms down for two weeks to protect the flap, had the side benefit of helping keep my LE from being worse than it is.  I will never know, but I do think that arms-down is a simple precaution if you face any LE risk at all.

Soooo much to think about!

Carol

I guess all doctors are different... When I had nodes removed (last Dec), my only instruction was to not do repeated motions, like shoveling snow... I only had 2 nodes taken though... maybe that makes a difference.

mrsnjband,

How do you do the scar massage? Can you be more specific?  Do you use any lotion/oil?

For those ladies who have been out for a while.  Did you recover all sensation to the breast and belly?  A lot of spots still feel like on novacaine...weird...but getting better every day.

I had immediate reconstruction and I have a good amount of feeling in my breasts. I do have some totally numb areas in my donor sites though. The most numb area is below the sites, at the top of my thighs at the front and side. That bothers me the most.

I had the opposite effect. I got full right away... its better now... which is kind of too bad. I was liking the fullness after like 4 bites.

My tight ab skin is pressing on my stomach. I am able to eat less than half of what I could have eaten. It doesn't feel "full" in the appetite sense, as much as it feels like uncomfortable pressure. Also find I have to run to pee more often for a given fluid consumption.

Wow.. Our lists are so different... I never used ear plugs, never used A&D, couldn't wear sports bra (would smush my nipple).. Funny how we really do have our own needs.

Thanks mrsnjband, I will try that.  Seems easy enough,  How long do you do it for?  Just once over the whole incision or several times?

Hi Julianna51 -

I'm scheduled to be off of work for 6 weeks, but my PS told me 4 weeks, I just heard 6-8 from so many others that I scheduled it longer rather than less time and figure I can always come back earlier if I'm ready. I'm about 1.5 weeks out from my UMX w/DIEP and if I had a more sedentary job (I'm a teacher) I could probably go back sooner than 6 weeks, but we'll see how the healing continues. Is there some work you can do from home to help keep up? If not, you have to let it go as this is important too, your health and well being are so very important.

-Judy

started a thread for DIEP 2012 ....come join and take this journey together, and any of the ladies that have gone through it please any knowledge a nd support would be welcome!