DIEP 2011

bdavis & grdnsive,

HAH.

veterans or veterinarians or anybody

do i have to rent a frickin recliner?

I did not have a recliner, but I did have an adjustable bed (where you can raise and lower the head and foot).  I have it for my asthma (sometimes I need to sleep in a semi-reclining position).  It worked out well, but I have heard of people making pillow nests and using wedge pillows successfully.

Ok ladies - 15 days out and starting to freak... need you all to talk me off the ledge... 

I know to bump up protein and vitamin C, and to get yoga pants and bit t-shirts (oversized), and to have a recliner to sleep in. 

Can anyone tell their experience as far as what they could and could not do during the hospital stay, and then the first few days at home?  When did you all first venture out for a slow walk around the block? 

Ugh. Surgery.  Now that I've experienced it twice, I am so much more apprehensive than I was for the initial UMX....

just_V and mgm1953 - I didn't have a recliner, and immediately began sleeping in bed with a couple of pillows, though the wedge thing someone mentioned would probably work better.  I was in the hospital for 5 days post surgery as my BP was problematical.  I stopped all pain meds the 2nd day in the hospital.  For the first few days after coming home, I really couldn't do much of anything, I even showered sitting down.  By the 2nd week I was doing a few things that my DH was sick of taking care of.  Began cooking, etc, but if I got tired I sat down.  

Until I started back on tamoxifen (4 weeks post surgery) I was doing well and gaining ground regularly (I did get a rather large seroma in my tummy, but it wasn't painful, and compression garments helped), but then started going back downhill.  Went back to work week 6, but then at week 8 discovered I had DVT and multiple bi-lateral PE's, so back into the hospital for a few days.  Now I'm at week 10 and am beginning to be able to do some daily exercise.

Carol - I'm happy with my surgeon and what he did.  Like you I had attempted to make clear to him that I didn't want to lose core strength (though I don't kayak, I do a lot of other "stuff") or quality of life.  I've begun crunches again with my PS full endorsement - not a lot, but beginning the rebuilding.

JustV, my hospital experience was not typical, but here goes. My August 23 BMX w/immediate DIEP was 20 hours long because I am a free bleeder and it took a long time for the PS to get the capillaries to all reconnect. (My noobs are perfect, have been since surgery, have healed beautifully and the PS is absolutely ecstatic with them.) I had never had major surgery before, so you are already several steps ahead with knowing what to expect. I was only in the ICU for about 8 hours before they moved me to a regular room. My surgery was from 8 am on 8/23 to 4 am on 8/24. They got me up in a chair at about noon on 8/24 which was a huge mistake -- I am tall, the chair was too low, and it took an hour to get me back up in bed. They were giving me dilaudid for pain, which was a freaking nightmare for me -- Narcotic pain meds are not good for me. Dilaudid gave me hallucinations! I begged them for something else (demarol, tramadol, fentanyl) but they insisted dilaudid was the right thing. They finally got me a pain management doctor who gave me regular tylenol, which worked just fine. I got up on day 3 in the hospital (refused on day 2 because of bad experience on day 1). I walked on day 3 and day 4 they discharged me. I needed a lot of help in and out of bed in the hospital. When I got home, I needed help getting out of bed for about 3 more days -- to about 7 days after surgery. I needed help sitting up to get out of bed for about another 3 days, but I was being extra-scared and cautious. I had 6 drains and they were unpleasant. I had 1 out 8 days after surgery. 4 more came out 2 weeks after surgery, and the last hung on for another week (a hip drain). I didn't need help in the shower but DH stood by just in case. I walked a lot around the house (I had a little circular path I could walk). I didn't walk outside for about 2 weeks because we were in a horrible rainy period (Hurricane Irene and aftermath). I am now 9 weeks out. I started back to work from home part-time 3 weeks ago and bumped to full-time last week. I went into the office half days yesterday and today and will work from home tomorrow because I am exhausted. My biggest problem was the narcotic pain meds -- once I got off those, I felt much better. I also had my belly incision open up because my yoga pants were turned down (to accommodate those dang drains) and they rubbed against the center of the incision. In retrospect, wearing dresses or housecoats would have been a better idea for me.



Hope this helps ... These were just my experiences. YMMV!



L

I didn't need a recliner either. Just used pillows. My bed is 30" off the floor.

I did use a recliner, and here's a thought: find out if the bed plus pillows, wedges, etc is likely to work for you, by doing a dry run for a few nights now.  I decided to test the recliner that way, and I found that I needed to adjust things a bit to make it comfortable (like, a tiny pillow under the small of my back). I also fiddled with getting a twin mattress pad to stay put as well as figuring out a way to get sheets to stay put, so I could make the thing feel as much like a bed as possible. I would not have wanted to do all that fiddling around when I came home. 

I'm not trying to say that the recliner is the answer for you, mgm, just that if you wonder what might work, stick some pillows/wedges, etc. around you, under you, or whatever,  in your bed now, tell yourself you want to sleep on your back, and see what you learn about what bugs you.  It will still be different when you come home achy and touchy, but some experimenting now might speed up your process of getting comfortable later.

Carol

Just V,

I was very surprised on arriving home (left hospital morning of day 4) that in between my MANY naps, I was actually pretty comfortable being up and around. No lifrting arms higher than shoulder for two weeks or so (protects your blood supply I think, and I know that this precaution helps reduce post-surgical lymphedema risk). This meant for me that washing and brushing hair required one serious head tilt! I brushed my hair using a brush with a long handle (didn't give a hoot about 'styling' it), but I did ask DH to wash it for me.  His technique was totally lacking in finesse, but it got the job done. 

The range of motion limitation made it challenging to get a towel around my back, but DH came to the rescue there, too.  He was able to stay at home with me for two weeks after hospital discharge, as he is a consultant and can work remotely. When he left, I had other family around, but I did not need the shower/shampoo/towel help by the time he left--so two weeks was the extent of what I considered meaningful need for help. 

I remember going shopping 16 days after surgery, with a friend, just to get out of the house. I felt a little tired after a few hours, but we walked, browsed, and just kept going for five or six hours, and I felt great--just a few breaks to sit and sip water.

After that, I had several more weeks before I had all my pre-surgery energy back, but I could do whatever I needed, sometimes patiently. Like, unloading a dishwasher--two plates at a time instead of six, especially lifting them up into a cabinet. They were not too heavy, just a bit uncomfortable to lift much of anything for a time. 

I am still being very cautious on picking up heavy objects (almost 4 months post surgery).  My PS wants me to be very conservative in lifting anything, no more than 15 pounds for now.  I am not finding that to limit any activity; except schlepping groceries from car to kitchen means lots of trips, one or two bags at a time.

I started walking five days after coming home, about a quarter of a mile at first, and built up to a mile--not particularly fast--by about the third week. 

One suggestion I have may not apply to you, since you already had the mx, and I don't know if you will have range of motion limitations after your recon, or if that only happens once with breast surgery (I had bmx with immediate recon). My suggestion  is to mark on a wall, with some pieces of masking tape, the highest point you can reach while facing the wall with your toes right against it.  Mark your reach for each arm. Then when you get green light to start working on getting your range of motion and your reach back, you will know what you are shooting for. 

When I started my wall-walking two to three weeks post surgery, it was laughable how limited my reach was. I put tape at the limit of my reach every day. I think this mattered so much to me, because it was a way that I could see tangible proof that my stretches were getting me somewhere. Somehow that daily progress--sometimes just a half inch--meant a lot to me. That tape was a way to physically measure how far I had come.  After a week or so of stretching, my progress grew by leaps and bounds each day. This helped me think: if this is how much I can see my reach improving, imagine the healing that is going on inside the abdomen, inside the noobs--where I cannot see! Would you believe I just took the tape off the wall this week?

You will be fine....it's tough at first, but you'll put that part behind you faster than you imagine.

Carol

Mgm1953,

I am a side sleeper and I didn't have any trouble sleeping on my back propped up.  It was FAR too painful to try to sleep on my side ... even if I tried rolling over in my sleep, the drain pull/pain woke me right back up.  Even after the drains came out, the noobs and the swelling under my arms kept me from rolling on my side.  I am 9 weeks out (yesterday) and started sleeping on my side regularly only last week. 

We put pillows and pads on any chair that I used around the house so I wouldn't have to bend or strain to get up (I am 6'1", so getting up from low chairs is torture on my knees anyway).

We have replaced all of the toilets in our house (long ago!) with ADA toilets, so they're taller.  We also had a potty lift seat (a plastic seat that you put on the toilet to raise the height) from when DH had back surgery.  That worked REALLY well -- I didn't need to strain at all to get up.  You can buy one of those at any drug store with a medical supplies section, however small.

You will want to keep your legs elevated in bed -- you won't be allowed to lie flat for some time.  It goes with walking hunched over -- they don't want you to put strain on your belly incision for a couple of weeks.  Propping my knees up was essential in sleeping on my back -- otherwise my lower back killed me.

Getting out of bed without *much* pain?  10 days for me.

L

Wow!  Thanks everybody... So I will be in the hospital for 4 days (per my PS) and that day when I am released, my sister is flying in for 10 days... so sounds like she'll be able to help me past the worst of it... ugh.. need to avoid morphine (nauseates me) and Abien (makes me a hot mess the next day), and tape down the drain leads about 2 inches.... ok - I should be ok - just not really looking forward to it...

Hi SeaShelly,

There's a Diep stage II thread, so you might look for that, for plenty of information about this.

Carol

MGM and Just V, you will learn tricks after surgery for getting in and out of bed, off the potty, etc.  After watching me struggle a couple of times to get in and out of bed in the hosptial my DH said, why don't you use the bed to help you do that?  Oh, well, duh.  Why didn't I think of that?  So, after that I learned to put the head of the bed all the way up and the foot of the bed all the way down and that helped to "push" me out and then getting back in I raised the bed as tall as it would go with the head of the bed all the way up so I didn't have too far to fall back.  When I got home, I learned to grab the sheets to pull myself up instead of having to rely on my muscles.  Looking back, I can honestly say that the days prior to the surgery were much harder than the surgery itself.  It was a lot worse in my mind than in reality.  Also, when I left the hospital we went to the Hope Lodge for 6 or so days. I only had two pillows and a twin bed.  I was fine.  I totally agree with Libby - if you roll over on your side it won't take you long to roll back over.  with drain tubes, stitches, etc. it hurt to sleep on my side.

Betsy, we leave on Wednesday and stage 2 is scheduled for Thursday.  Honestly, I am getting myself all worked up again.  I had such an easy time with stage 1 that I am terrified something will go wrong in stage 2.  I am trying to have happy, positive thoughts but I am a worrier by nature.  I will let you know how it goes!

Susan

Ladies of the DIEP,

 Thanx so much for your reassuring words and advice! As you know, the dread is the worst of it. I'm strangely wanting the day to come so I can just do it and be done with it! This is turning into a research paper! but y'all are awesome sources

mgm,

Adding to SAMayoFL's suggestion to let the hospital bed help you, I did the same, plus once I was as upright as the bed could raise me, I  had DH push my back (one hand high, one hand at my lower back) to help nudge me until my torso was facing the edge of the bed. Then I hooked my legs over the edge of the bed and used legs and butt muscles to power me in the direction I needed to go.

When you're home, if you find you have difficulty getting on and off the potty, DH can run out to find some temporary supports/rails you can use to steady yourself and help pull up and down. I didn't need that at all--my legs are quite strong and I found I could rely on them 100% for up and down movements, and for balance.  But a friend found the temporary rails, sold in in neighborhood pharmacy in my little town and not too expensive, made the toilet trips a lot easier for her. 

You can test this ahead of time, perhaps.  Just sit on the john your arms folded and against your tummy, and then keep them there while you get up. Really focus on what you feel in your abs. That might tell you if your legs and glutes are doing most of the work or if you are going to feel it a lot in your abs.

You are 100% correct that the dread is the worst of it!  You will have some pain, of course, but honest, the body is amazing and it's just a few days before things feel much, much better. My bad days were just one or two, and really not horrid. I had worked out extensively for three months to prepare, so I think I had overall muscle strength that stepped in to take the load off where my pieces and parts had been meddled with.  I think if you read all the diep stories here (maybe you already have!!), you can see that a common theme is that on about day 3 or 4, there's a realization that hey--I feel a lot better. 

And you will!

Carol

Susan.. I just read your post... so by now you must be done!!!

As far as getting out of bed, I used my legs to sit up... grabbed behind my knees and pulled up that way... as for the potty, I never had a problem... it knind of surprised me. I thought it would be painful or difficult to get up and down, but no issues at all.