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Topic: Kicking LE's butt!! Exercise & Self Care Log

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 7, 2012 07:32PM

Tina337 wrote:

Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.

I still have my arm and hand wrapped, and I am also wearing my compression tank with round swell spots on each side in the underarm area 24/7 as per my LE therapist's instruction. This afternoon I did the entire Lebed DVD. Woohoo! It's a start. Yes, that DVD is still creepy! I'll have you know I continued with the exercises even when my husband unexpectedly walked into the room. I started making fun of the DVD, which was kind of fun, so I continued for the rest of the program taunting and making fun of the weird instructions, cheers, and "dancing!", etc. It actually made me feel more powerful and in control, and I liked that!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 26, 2012 10:35AM carol57 wrote:

11BC,  not only do we not 'mind,' we are delighted to have another cohort to help keep the energy up! Looking forward to your check-in posts going forward.

Carol 

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Mar 26, 2012 10:42AM kira wrote:

11B,

LE treatment does tend to set us back, as does LE itself.

Everyone is welcome on this thread--even slackers like me.

I didn't get any real exercise in yesterday, but hope to rectify that today. I'm planning on getting a pedometer to document the few steps I take, and wondered if it would register when I'm on the recumbent exercise bike.

This thread is for LE self care and exercise.

I did read an article in the paper today about Pilates that the reporter did at home, and how she always does it on alternating days.

My goal is to be kayaking this summer and have a regular exercise routine: lately I walk the dog, but find I get more aerobic work out with the exercise bike, and will try the real bike soon.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 26, 2012 10:46AM carol57 wrote:

Kira, I don't think a pedometer will register on an exercise bike, at least I know mine would not.  Mine is a type that registers vibration, and for that reason, it doesn't pick up pedaling at all, and it's a bit inaccurate on an elliptical.  To use it on a bike, maybe a little google searching will turn up a model that others have found works for bike as well as for walking steps.  Good luck with that!

Carol 

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Mar 26, 2012 01:11PM Tina337 wrote:

11BC - Yes, please post. The more, the merrier!

I think it is important to acknowledge that everyone here is at a different stage in their recovery. Each of us comes to this thread with a different level of fitness pre/post surgery and treatment, and after developing LE. We all need to respect our bodies and do what we can today, with the goal of making good self-care a habit, as well as increasing our fitness level safely. No one is considered a "slacker" when they are doing what they can for today. At times, some of us will be making strides and provide great motivation for others. However, because we have LE, and due to its unpredictable nature (which seems to have a mind of its own), there will be times when some of us are experiencing swelling, flares, or cellulitis. Extremes in weather, barometric pressure changes, heat, humidity and changes of routine/diet due to travel and flying - these are things we sometimes can't avoid, and we won't always be at the top of our game. The purpose of this thread is to keep ourselves on track as much as possible, to take care of ourselves when we need to deal with flares, and to provide support to each other whatever our current status. Sharing how you care for yourself when you aren't at your best is also helpful. It provides a broader picture of what living with LE is like, the natural ups and downs. It provides hope that each of us can work through our lows and will feel better. So, with that in mind, let us all forge on in our journey to greater self care and fitness!!

Have I mentioned recently how much I love you guys? Well, I do, and I am so grateful to have your companionship here on this thread. The difference in my compliance with self care and motivation to do some form of exercise regularly is like night and day. It really is helping me get through this arm flare in a better state of mind.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 26, 2012 02:03PM carol57 wrote:

Tina, beautifully said!  It is indeed companionship, of the very best kind.  Maybe we should permanently resolve to use the term 'back off' instead of 'slack' --we need to back off the activity out of respect for our LE from time to time (and for sanity sometimes!). But a considered backing off is far from being a slacker.  And if truly we're slacking...we're not slackers, we are just in need of a little dose of motivation.  And this is a good place to get that.

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Mar 26, 2012 02:08PM BeckySharp wrote:

11 BC--welcome.  I hope you meet your goals today.  It is so hard to do when LE kicks your butt!

Carol/Kira--I will check my pedometer on the bike.  I have tied it to my shoelace and it worked but may only do so on one side on the bike.

I have done the weights today, one MLD and Lebed.  I am DETERMINED to do an hour on the elliptical in about an hour.  I will only log back in if I fail.  I don't think I will.  Then one more MLD.

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 26, 2012 02:54PM olearca wrote:

11 BC, my name is Catherine and I'm a slacker!  And a "bug".  And LE was kicking my butt!  LOLTongue out  Today I vow to be the windshield! 

 Tina, thanks for continued encouragement and the recognition that we all are at varying steps in the process.  I am so motivated by your attitude and by Becky and Carol and others here who are finding ways to make exercise and "self-care" a priority. 

I met with a new LMT today (thanks Kira and cookiegal) and it was the best 2 hours.  Of course, I wasn't swelling today!!  (Murphys law).  But, I finally feel more empowered as she taught me how to correctly do MLD - which my previous LMT did not believe in. 

So, reporting in with a one-mile brisk walk this morning.  10 minutes of stretching (bad cord still in my axillae) and MLD with and by LMT.  Upping the hydration today too. 

~Catherine: Multi-focal high grade DCIS, LCIS.Micromets 1 node, NSBMx 6/2/11, Lymphedema 8/11, Reconstruction/Exchange 10/27/11
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Mar 26, 2012 08:16PM Tina337 wrote:

Hey, I usually call myself a slug, which is kind of funny since it's sort of a cross between slacker and bug!

I noticed today that with all my yacking last night I forget to report in yesterday. No morning MLD, but I wore my tank with large orange foam insert, sleeve and glove all day. Did 400 steps on stairway inside. Thorough MLD at bed, and I switched to tank with round inserts on both sides of trunk.

This morning I did MLD, put on tank, sleeve and glove. Did 400 steps, and goal for later this evening is a few ab exercises. Water, water, and a bucket of water tonight with my sushi. I wish the weather would cooperate; it's gone from low 70's to rainy, and now windy and chilly. We actually have a frost warning, and forecast says down below 30 degrees overnight!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 26, 2012 08:52PM carol57 wrote:

I feel light as a feather tonight, because I got some pretty good exercise in today. It must have been a windshield of a day.

I started with morning MLD, am well over 10,000 steps today, including 3.5 miles on a treadmill where I alternated running with walking and played with the elevation a good bit to keep it from getting too boring.  That's Becky's strategy, and it works well.  Then I worked out with a trainer, doing abs, core, weights, flexibility and balance for 90 minutes. He's very interested in my LE and post-recon-surgery progress, good at what he does, and a real human being to boot.  I'm so lucky to work with him.  (The man has a world 'squat' record in powerlifting...yet a real softie when it comes to helping others.)  I drank tons of water today and of course, wore my sleeve and gauntlet while working out. And UA for truncal.  I'll do MLD before bed, soon.

In the 'bad' department, maybe, just maybe I ate too much chocolate today.  But I heard a fabulous radio teaser, just as I needed to exit the car to hop into the gym, that said people who eat a lot of chocolate consume extra calories, but some study seems to show they don't gain excess weight from it.  I don't even want to check out the study, lest I discover the science is flawed.  Let's just believe it!! 

Also, you don't read the word 'Lebed' in my posts much. Today I decided I truly do not enjoy it.  

Catherine, it's great to see you here!  

Carol 

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Mar 26, 2012 11:24PM Tina337 wrote:

Final checking in. I did my ab exercises and bounced on the large ball for a little bit. Why is that so much fun? I feel like a kid when I do it. All tucked into bed and ready for MLD.

Carol, it is so nice to SEE you! What a wonderful smile you have!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 27, 2012 08:17AM carol57 wrote:

Yes, there I am, my gray-haired old self!  I decided that if I could put my photo on Facebook (which I use only because I figured out there were more photos of my granddaughter on Facebook than were being sent to me!)--I could put it here, where I've come to 'know' people through their wonderful help. Of course, if I had a beautiful work of art I could capture for an avatar, I would use that instead!

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Mar 27, 2012 08:26AM kira wrote:

Carol, there is a very funny Modern Family about when Claire tries to "Friend" her daughters. The rule in our house is that we are not allowed to friend our children. I set up Facebook, back in the days when you had to belong to certain Universities, and barely use it. My daughters will send me links to photo albums. I'm a Luddite about it, since google mines your data just as much, but it feels so exposed and public to me.

Yesterday: high winds and cold here, MLD and exercise bike.

Carol, once I had pm'ed a woman who was getting PT at the same place I was--when I had my frozen shoulder--and I'm signing in and someone says "kira?" and I was thrown for a loop. Good to see your face!

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 27, 2012 09:03AM carol57 wrote:

I don't make my facebook access public, and my 'friend' list is pretty short.  My daughter and SIL do put a good number of photos on thier FB page, and ultimately they hounded me to join FB instead of making them upload to any photo site.  They had the carrot...cute baby..and we're five hours apart, so I caved. 

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Mar 27, 2012 09:44AM BeckySharp wrote:

Yeah I caved into FB with 10 nieces and nephews scattered and friends all over the world.  I like the pics and videos.

Kira--pedometer did not work on bike.  It captured only about a third of the moves.  My elliptical gets only about half.  I had not been using it on the machines as both record distance.

I have to go to work today so I have already done MLD and an hour on the elliptical. Will do Lebeds in a few minutes and off I go.  I like knowing the cardio is behind me but hate to have to put on sleeves twice in a day if I do am cardio.  If I do it in pm I have one sleeve on all day and after put on my jovipak  (which I love) for the rest of the evening.  But then I dread knowing I have to do it all day.  Decisions, decisions.  Anyway this windshield is finished for the day!!!

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 27, 2012 11:11AM olearca wrote:

BRRRR.....its cold in NY today!  Who knew?  I went out for my brisk walk and had no idea how "brisk" it actually was going to be.  Brrrr.....

Ok, cardio done.  MLD done (although, I really stink at it), stretching done.  Deep breathing, Hulk-style kegels done.  Sleeves in place after shower. 

Now on to hydrate.  I'm determined to be a windshield!

Tina, (or anyone else??) do you use the ball for bouncing alot and does it help with the LE?  LMT told me about the rebounder but I don't yet have one.  Anyone else use either of these tools?

~Catherine: Multi-focal high grade DCIS, LCIS.Micromets 1 node, NSBMx 6/2/11, Lymphedema 8/11, Reconstruction/Exchange 10/27/11
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Mar 27, 2012 12:25PM carol57 wrote:

I'd like to hear more about the ball and the rebounder, too.  

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Mar 27, 2012 01:02PM - edited Mar 27, 2012 01:07PM by Tina337

I forget where I first read about it here, but I know Binney has mentioned sitting and bouncing, Becky recently said she bounces on the ball and pumps her fist in between weight lifting sets, and I just read about someone else doing it but can't recall thread. My house is old and has low ceilings so no way could I use rebounder. (Did you just get an image of my head going through the ceiling?!) I was so excited when I heard about using the ball because that is perfect for me. I put both of my arms out straight above my head when I do it. I can't say whether it makes a difference or not. It feels good, and I assume you're getting some core exercise since you have to stabilize yourself while bouncing. I wish I could count this as core exercise, but I don't. :-/

I don't have any experience with using the rebounder, but I think it's best on your joints if you bounce without feet actually leaving the ground (the center fabric of small trampoline).

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 27, 2012 01:02PM - edited Mar 27, 2012 01:03PM by Binney4

Carol, how lovely to "see" you! I was thinking of you as a gorgeous but kinda goofy white poodle. As for that study you mentioned, OF COURSE they found chocolate didn't cause any weight gain. Look no further!WinkLaughing Hmmm, it that reminds me I have some Trader Joe's dark chocolate-covered blueberries in the cupboard.

I remain bummed (or should that be "bugged") over this new area flare, but I'm back to walking and dog training (lots of exercise there!Tongue out) and Lebed. No jogging yet because I wonder how much that may have contributed to thisFrown (of couse the cracked rib and lying around with the flu didn't help any). What's causing me despair is the fact that this is my left chest, and ever since this flare started it hurts when I type, even though most of the swelling is down now. I have a left-hand-only keyboard that I had to learn to use because when I type right-handed my arm/hand/chest swell on that side. Does this mean I have to start looking for a toe-only keyboard?!! Grrrrrrrr!

So, yeah, some exercise and a handful of, uh, blueberries. Fruit is good, right?Kiss
Binney, in bug mode

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Mar 27, 2012 01:58PM - edited Mar 27, 2012 02:06PM by Tina337

Oh, Binney, the hurting while typing sucks! I had no idea you have a special left-handed keyboard to avoid swelling on right side. The compromises you have made and setbacks you experience without broadcasting amaze me. Makes me feel like I have a glass head! I can't keep quiet about a freakin' hangnail! I just checked your BC.org membership date, and I am shocked to see that it is 2004! Do you mind me asking how long you have had LE? We are so used to looking up to you for info that sometimes I think we forget a little (okay, I will selfishly admit that I do) that you have your own struggles with self care and have had to cope and adapt to accommodate your LE. The fact that we are mostly aware of your activism and incredible kindness and generosity with your time here really overshadows these things. I suppose that is a sign that you work hard to not have LE define who you are in life. You seem to have found a way to thrive in spite of the ups and downs of LE, and that is very much the point of this thread. I really hope this left side hurting while typing is a temporary thing. Yay for walking, dog training AND chocolate covered blueberries!

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 27, 2012 02:05PM JO-5 wrote:

I just saw this thread.. I have not posted on any LE threads lately but this one is interesting.

Some of you might know that I hate exercise... always have done enough yard work, house workd, etc to keep fit but don't do enough yard work for any benefit any more and just can't get into exercising.

However this morning I did the pump, and the first part of the Lebed tape, plus MLD. I use the kinesio tape, too.  I'm doing fairly well with my LE in the arm... but the back straight down from the back of the arm pit is still puffy and uncomfortable. It was doing ok until I went through a lazy streak and didn't keep up with everything.

I admire all of you that have lost weight. I have lost about 15 pounds since going off the Arimidex three years ago..... but need to lose at least 10 -12 more and am STUCK!  I know I should exercise but just can't seem to .... arthritis in my back, knees, and hips is a factor .... OR IS THAT JUST AN EXCUSE?

Keep up the good work everyone and I'll try to get on the band wagon!

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 27, 2012 02:21PM olearca wrote:

Binney, I am overcome with gratitude for all that you do for us.  Advocate, cheerleader, supporter, friend.....and I just want to "ditto" what Tina so beautifully expressed above.  Crap!  You just can't catch a break. 

 Jo - I hear ya!  I am not always motivated to exercise and I do much better with a buddy.  As I don't have a "live"  BC buddy around who is at the same pace as me (or that has LE), I am now relying on this group to be my "kick in the pants".  The accountability is great and in the end, you take it day by day.  As Kira reminds us, Some days you are the windshield and some days you are the bug.  Yeah to you for doing your Lebed and MLD.  Gotta start somewhere and some is better than none.  Welcome - and feel free to kick me in the pants any time while kicking LE. 

Catherine

~Catherine: Multi-focal high grade DCIS, LCIS.Micromets 1 node, NSBMx 6/2/11, Lymphedema 8/11, Reconstruction/Exchange 10/27/11
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Mar 27, 2012 03:08PM carol57 wrote:

Binney, have you ever tried Dragon Speaks software?  My brother swears by it.  You use a microphone and talk; the program is voice recognition, and he finds it easy to use and accurate. Or so he says!  I know he uses it for email, which is usually so short that to me, the program must be really easy to use, or it would be just faster to type a short message.  

If you're dog training, might I send the goofy poodle for a visit?  He could use a training tune-up.  He's loving, lovable, at home in a kayak, but he becomes deaf to suggestion or command in the presence of squirrels or anything/one he thinks has approached to play with and/or chase him.

Seriously, I'll join the chorus to say thank you, Binney, especially knowing how you go out of your way-left handed keyboard and all--to give help and support to all of us. 

Carol 

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Mar 27, 2012 03:17PM JO-5 wrote:

Thanks Catherine,

Far be it for me to kick anyone in the butt. I am the worst at exercising, and most of the time I am the bug.... a squashed bug! Yell

May I add my thanks to Binney along with the rest of you. She has been helping me for a very long time and always with such gentleness and sweetness! THANK YOU BINNEY FOR ALL THE TIMES YOU'VE HELPED ME.

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 27, 2012 03:43PM - edited Mar 27, 2012 03:44PM by Binney4

Tina, Catherine and Jo, thanks for your kind words! Tina, I joined in 2004 because that's when I developed LE. The bc (which was diagnosed in 2001) was a long haul to get through, but while doing so I couldn't handle bc.org -- just didn't want to hear anyone else's woes, I guess. I had a good team of docs and trusted them, they listened to me and got me all the information I needed. But when the LE hit they were clueless, and I found myself amazingly alone with a serious chronic medical condition and no help at all.

So I came here looking for other women who might have answers. Just to show you how upset I was, when I first signed in I was Binney1, but somehow I got signed out, forgot my password and ended up re-registering as Binney2. That time I carefully wrote my password down, lost the paper I wrote it on, and soon became Binney3. And so on. I have been Binney4 for many years, mainly because I never sign out anymore. Otherwise by this time I'd be Binney5687.Embarassed But of course any day I could morph into Binney5 -- watch for it!Laughing

When I joined there were only a few forums here, and you could easily read every post on the entire bc.org site every day. (Hard to imagine now!) I started asking about LE and, though there was no one else diagnosed with it, there were several other women with "mysteriously" swollen arms who were as amazed as I was that the swelling had a name, much less a way to treat it. Outrageous! We asked for our own forum and the mods gave it to us, and it's appalling to find that almost eight years later there are STILL women elsewhere on these boards who have no idea why their arm or breast is swollen. But now they have this safe place to land, because all of you are here to catch them -- and to catch them up on what they need to know!Cool

THANK YOU, ALL for being here for me!
Binney

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Mar 27, 2012 03:59PM BeckySharp wrote:

Binney--What a trooper you are.  I saw where Carol told you about Dragon Speaks.  I had a student who could not write (or read) but had an incredible memory when read to and beautiful things to say when he spoke.  He used Dragon Speaks to do his papers to me.  What a drag when typing is painful--and you type so much for us!!!!  Bless you.

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 27, 2012 09:07PM carol57 wrote:

Today I limited my cardio work to a 40-minute, 2.5 mile walk outdoors with a friend (it was beautiful out!). I exercised my fingers a lot doing work at my keyboard; too bad that doesn't help with LE!

I did not do morning MLD but will end my day with it.  

Carol 

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Mar 27, 2012 09:38PM kira wrote:

Binney, you have helped immeasurable women. I know when I was terrified and lost, you patiently returned all my frantic pm's, and I know you keep on helping anyone who turns to you.

I believe you have single handedly created this tremendous resource for us.

Heal up, it's been a long haul with this flu.

As for my self care: cut and paste: MLD, exercise bike, a bunch of Hulks. 

Binney, you make advocates and educators out of all of us: with your example, we learn and try and help others with that hard earned knowledge. 

Think I'm more windshield than bug today.

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 27, 2012 09:45PM Estel wrote:

Hi ladies!

I've only read the first page of this thread but I've marked it as a favorite and I'll definitely come back, catch up and post.

I will do my stretches before bed (prescribed by my therapist) and the Lebed opening before bed as well.

I'll be back!  Wink  I HATE doing the MLD.  It takes up so much time and I feel like I'm not doing it correctly because I never notice that much difference when I do it.  Undecided 

BMX 2/2010 with immediate reconstruction. Exchanged with silicone implants 7/2010. Diagnosed with LE 9/2010 Dx 9/2009, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Mar 28, 2012 09:55AM olearca wrote:

Cardio/walk - check. MLD - check.  Stretching - check.  Hulks - check.

Now on to inflate my exercise ball and go buy a paint roller (I can't reach my back and I have a stubborn spot of swelling). 

Hope everyone has a great day!!

~Catherine: Multi-focal high grade DCIS, LCIS.Micromets 1 node, NSBMx 6/2/11, Lymphedema 8/11, Reconstruction/Exchange 10/27/11
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Mar 28, 2012 11:29AM JO-5 wrote:

Is it better to do the Lebed before bed? I usually do it in the morning.

Didn't do anything but MLD this morning. Hubby has a Dr. appt. and we have a lot of running to do today. That will take most of my energy. (I know..... another excuse! Embarassed)

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.

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