NOLA in September?
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Downey... each room has a murphy bed and I think MOST people have their spouse in the room... The first couple of nights the nurses do come in to take your temperature, check your flap etc, but they don't turn on all the lights or anything... My friend was with me, and she stayed in the room for the 5 nights I was there...
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Day 3 and I slowly getting strength back. Although my tummy is so very tight, apparently it is swollen cause I can't fit into my underwear! Hub and daughter are arriving soon and I know that will boost my spirits. Chatted with Need2new yesterday, I dunno if she is posting. And I hate this binder! It keeps riding up, I have no idea how I'm going to get this thing on every day!
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Downey30 - I think most women have someone staying with them. My husband stayed with me the whole time I was in the hospital. Your husband can order off the food menu so all his meals while you are in the hospital are included. You can keep the lights off at night and the nurses are quite when they come in. Unless your husband is a very light sleeper it should be OK. My feeling was that even though it is not necessary since the care is so good at SCSH, it is nice to have someone there with you. Also, there is a World War 2 museum near SCSH and some sports bars if he wants to go out and watch some games- he does not have to be completely tied to the hospital. (Evidently there is a very nice night guard that told my husband about nearby restaurants, museums etc. ) I was feeling pretty good while I was in the hospital and also when I was back at the hotel. Homewood suites is near the football stadium and my husband actually went to see a Saints game after my stage 1.
VictoriaB- Even though I had my DIEP done someplace else (not nearly as skilled surgeons or as good nursing care) I can say that for me the tightness did lessen a huge amount by the end of the first 2 weeks.
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Downey, I've had my husband, my mom and my sister sleep in the murphy bed. They've all been fine. My husband wore earplugs as he is a bit of a lighter sleeper. And yes, the nurses are quiet and efficient and only turn on a very dim light.
Victoria--yes, the swelling! It will go down. Day 3 is much too soon to expect the swelling to be gone. I'm glad your husband and daughter will be there soon. And I'm glad you and Need2New got to chat!
Sandy, thanks for your feedback regarding high blood pressure. I am a belly sleeper and got back to side and belly sleeping pretty quick. My blood pressure started elevating a good 6 or so months before my cancer diagnosis. I actually had been suspecting something was just wrong with me and saw an endocrinologist, but levels were fine (except elevated BP). Then I found the lump. My PCP is checking my thyroid level to see if that's causing the high bp. I will have to look more closely at the types of meds and run it by my onc and LE therapist. They type I've started with relaxes the vessels? I'm getting weary of educating myself on so many medical things! This we all get here.
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Saw VickyB ans her family. What a treat.Keeping me another day, had to put the IV in again since I was nauseous and in nee of fluid/ The girls look goood from my perspsectiv ") Holly the nurse earned her money last night!!
Love the big rooom and peacefulness. will check in later whn I cam type better
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Hi Karen... Say HI to Holly.. she is a sweetheart!!
Downey... Also, (adding to what I wrote above) when my mom was in town with me for stage II she did not stay in the bed because she is 80, snores loudly and I wanted to rest and feared I wouldn't if I needed to in a sense care for her... so she stayed at the hotel... Of course that costs more... and the third time I was there, I was alone, so no one was with me... unles I was discharged to a friend who flew in.
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Buena - I agree with Running regarding the issue with swelling in your leg. If you haven't already, please contact the Center and/or your local MD. The big issue is the possibility of a blood clot and if it is something like that, you need to have it dealt with asap. As for the oil filled cyst, I had one that they had ultrasounded twice and each time that is what I was told was there. Sometimes the areas of fat necrosis liquify. While I was in NOLA this last time, I told Dr. S about it, because it was driving me crazy since of all places to form, it was exactly in the same spot as my original BC diagnosis. He stuck a needle in it for me and drained it in the office. It's gone!!! I am so happy. It was the tiniest little thing, but still drove me crazy. Nobody here would drain it... I think they don't want to touch Dr. S's work!
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Springtime, toomuch, runningforsanity and nordy, thanks for your reply. The lump may very well be fat necrosis. I'm surprised by quickly it occurred and how round it is. That is why I suspect it is a cyst. I'll know more tomorrow when I see my local doctor. The swelling in my leg is down but if that changes today I will heed your advice and call my dr. I am much calmer today and returning to a place of gratitude for being this far along with my recovery and for the support and insights that come from this message board.
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when I came in for my first stage 1 my hub was here the whole time. This time, he could only arrive today. THe nurses and staff are awesome, but, psychologically, I think it is better to have someone stay with you. I can tell you Charlotte and Holly are VERY patient people!
Need2new--they are keeping me tonight too. I had a ridiculous coughing fit and now they want me walking around all day. Glad to know you all think the swelling is normal, and the tightness. So good to hear from other people who have gone through this!
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Every nurse I had at the center was incredibly sweet, attentive and so quiet night. I was there so long I probably had them all. Betsy, I am sure you did too. Not of them woke up my mom or my husband.
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Yes Michelle.. In my 20 nights at the SCSH I am sure I had most.. maybe not all.. Not sure if I know a Charlotte, but she may have been one of mine when I was drugged up... I had Nicole, Holly, Jamie, Jamie, Erin, Toni, Terri, Donna, Yvette, and a few more ...
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Thanks so much bdavis & Momma2four, He was afraid that he wouldn't be able to sleep. I know that I would feel a lot better knowing he was with me. I'm going to give him the news
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I didn't get Charlotte until my last day and she is so sweet. Did you know she homeschools her 4 kids with her fire fighter husband. I have 4 kids and i know i would not be able to do that!!! I am not patient like that at all.
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Like one of the other girls mentioned the first couple nights they will check on alot so might want to invest in ear plugs or benadryl just in case:) I agree Holly would actually tip toe in and whisper and apologize over and over again for coming in, another sweetie!
Betsy...funny about your mom snoring, my mom does too!!! I got an app on my phone that was white noise sounds and put my earplugs in to help. I know she felt bad. But it all worked out.
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I agree ladies, ALL the NOLA nurses and staff are awesome, and they are one of the two reasons (the other being the docs) that I chose to come down here from the Northeast! Downey, I think your hub will be very satisfied with the food, the sleep, and seeing the good care you're getting.
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And I LOVE Alice!!!
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Hi all--I'm going to repost a couple of questions in case anyone has an answer that missed the originals...
1) I'm more than 2 weeks post stage 1. Is it common to have a mild constant pain slightly above the breast area? It feels like more of a muscle pain.
2) For hipsters--I'm having almost constant pain at the drain incision sites. The sutures pull and hurt...the other day one bled a little. Any advice?
3) Do your breasts feel warm/hot to you? It's from the inside as the skin is not warm.
4) I'm still taking vicadin fairy regularly (about 1 every 4 hours) as I'm still pretty uncomfortable--how long did you all stay on it?
5) Lastly, I'm exhausted a lot. I'm sure a lot of it is normal, and some from the vicadin...but I never thought I'd be THIS exhausted...I'm fairly young so I'm surprised!
Thanks...appreciate your responses!
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Thanks a lot.....Starting to get anxious. Going to make hotel res tomorrow.
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I dedicate this song to everyone woman on this list, past, present and future. And for those who are not on the list, but who are walking the BC journey.
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Djweinstein, I had some pain above my breast area for some time..where my original skin was. I stayed very swollen for a while. I had my surgery on 12/1 and again on 12/6 so not sure if it was from them having to go back in or if that was just normal...Ladies? My top area is still a bit swollen and or have some fat necrosis. I will find out in March. I had a little discomfort but i quit taking pain meds before i left the hospital. I would imagine the pain meds would make you really tired. I am sure we are all different as to what we tolerate so i am not sure what normal would be. 1/2 of my breast (i am a uni and needed 2 flaps for the one) almost failed and after surgery it was really warm...a lot warmer than the other 1/2 but then they became the same after a while. i really can't remember how long. If you are concerned about anything at all call them.
Betsy, Alice is soooo sweet. I could not believe she is a grandma. She doesn't look old enough. She told me she wears wigs everyday because she hates her hair. I had no clue until she told me towards the day i left. I cannot wait to see all of them again!
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Hey dj! Let me see if I can help out with some of your questions.
1. Mild constant pain- i would say I had some discomfort, but mine was a little lower. Is it on both sides? I think it is still really early on and if it is more discomfort or mild pain rather than sharp pain, i would not find that too concerning. However, if it becomes sharp or painful on taking a deep breath, that is a whole different thing. You have to remember all that trauma caused by the surgery, sometimes it just takes some time to dissipate.
2. Pain at the drain exit sites is totally normal... And I think most of us hip girls have encountered that. There are a few solutions, but I have found the best one to be using a drain sponge at the exit site. If you are not familiar with these, they look just like a 4x4 gauze pad, except they have a slit in it so that you can pad right under and around the drain. This also helps to keep it from moving around too much, so that the chance of it tugging is less. And yes, it is not uncommon to have a little bleeding at the site. The drain tubing is sutured to your skin to hold it in place - if the tubing gets tugged on at all, it can cause your skin to bleed. If you cannot find drain sponges, you can cut a slit in your 4x4. Just rememberto use super clean scissors!
3. Hmmmm. The skin does not feel warm but you have the sense that they are? Do they feel "full" and heavy? Many of us had the sensation of our breasts "letting down" much like they do when you need to breast feed. I don't know if that is the sensation you are having. Are the breasts the same temp (and color) as your surrounding skin when you touch them? It sounds from your post that that is the case, which is good.
4. Pain is subjective. Everyone has different pain tolerances and everyone perceives pain different. This I know from treating post surgical patients for more than a decade.... Not to mention they taught us that in school! If you are still needing it because you are having pain, then do not beat yourself up about it. I generally don't need much pain medicine for surgeries or injuries, but put me in the dentist's chair and I am begging for it. You do what is best for you - the only worry would be if you get to the point that you are on it so much that you start to form an addiction. I don't know what length of time that would be, but I would almost guarantee that the docs would stop writing you scripts for narcotics before that would happen! If you are worried about it, maybe try using a Tylenol in place of one of your Vicodin and see how you feel for that 4 hours. You may find you don't need it as much as you thought.
5. Fatigue! It is soooooo normal! Your body has been through a LOT, so rest as needed. It really does take some time to get feeling back to normal.0 -
Hi DJ-
I was off pain meds at day 5. Had LOTS of pain at hip drain sites--every little movement of that girdle hurt, tugging on the drain hurt, etc. I used neosporin + (the one that has pain relief) at the drain sites and it did help. Those drains were annoying. I also had vast fatigue for about 9 weeks. One day, or two and I'd be fine then I would just wipe out--this was for weeks. Hope this helps!
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Dj.. I will echo what Nordy says..
- Pain above the breast I did not have, bt I did have some in the crease below.
- Drain site pain.. my hip drains were particularly irritating... I used the ABD pad and slid the tube sinto the slit... and used the compression they gave me, so not pulling anything up and down over the site... I have heard of women taping it in placeto avoid movement...
- My breasts were not overly warm
- Pain... I didn't have any and was off pain meds in about 2 days post Hip flaps.. so I am not a good barometer... but after my DIEP I was on meds for 1 week.
- I was tired for a while... maybe a month
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Welcome to all of the newbies - not only have you found great doctors (and their staff) but this is an awesome place for information, support and friendship.
It's been a few weeks since I signed and I can't believe how long it took em to catch up. You are all so prolific (especially Eva with her limericks!)
To those of you asking about belts for the drains - I felt the one that the clinic gave me was way to lumpy under my clothes and I ended buying something called a belly band. It's for pregnant women who want to keep wearing pants that their bellies are too big for…but in this case I wore it around my waste and folded it over to create an envelope and I'd tuck the drains and tubes into it and it would hold it close to my body so it didn't bulge so much and it hid all the
Nordy - OMG! What an ordeal - I know you have the wherewithall to fight the insurance companies and be the trailblazer you are. I am certain that you will use all of your experiences to help many other women (just like you do on this board!) You go girl!
Just Laura - I too have the pooch. I sent Celeste some photos and she said "Looks normal. It can take a year to 18 months for all of the swelling to go down." Yikes! I thought it would be much sooner. I did some PT and massage and I've seen a slight difference…but the biggest change seems to be when I'm sleeping. I still am wearing the compression garment - because it feels better. Maybe we can email some photos - I'm curious to see if we're talking about the same thing or not. Let me know if you want to.
Sandy - it is shocking how many people cancer is touching…my ex-employee was diagnosed and went ahead with surgery and delayed reconstruction (you can bet I'll be touting NOLA!), another friend just got diagnosed with a rare uterine cancer, and yet another with stage 3 lung cancer. What is going on!? I'm hoping I can turn some of myVictoria - glad your surgery went well. I had a tummy tuck during stage 2 (and plication at 2B) and I remember how hard it was to stand up straight. For me, I think it took at least 2 weeks to feel like I wasn't hunched over like a 95 year old. Don't worry, it will losen up (and it will look great!)
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Hi DJ. Sorry I missed your surgery - I was out of town. But I bet you're glad to be on the other side of Stage 1. You've already gotten some answers to your questions but I thought I'd chime in too.
1) I did have muscle pain and achey-ness above my breast. I think it's from when the Dr reaches way up to get the upper fatty areas of the breast. It did go away. But I was happy to have any feeling at all at that point. It will ease up with time.
2) The drain sites were very painful to me. I did get some neosporin plus which has a numbing agent in it and that helped a bit. Also, how I positioned the drains under the compression garment made a difference. But sadly, I think they hurt until I pulled them.
3) Hot breasts - do let one of the nurses know.
4) I took the vicadin for 10 days but was so itchy I had to stop - it took about 3 days for the itching to totally subside.The tylenol was good enough during this time and I took sleeping pills or benadryl at night.
5) Exhaustion - I think the surgery, pain pills AND the antibiotics really take a toll on you. I recall going to a business meeting that could not be changed 3 weeks after my stage 1. I got up, showered, dressed, then took a nap...went to the meeting (it went great) came home and slept for 3 days. Little things that were always easy wore me out. I was in good shape too (but not as young as you are.) It is hard on everyone. Go easy on yourself.
Hope to see you at the next FORCE meeting. Are you planning on going?
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Someone asked about nipple sensation post surgery - so I decided to do a test with my husband last night. I closed my eyes and he touched different parts of my breast to see if I could feel it. It turns out I have full feeling in my whole breast and areolas, but the nipples are different. I can't feel any light touch at all but if he pinches or squeezes them I definitely can tell. They do respond to cold and air (getting erect.)
Before surgery I had very sensitive nipples (that were a good part of our sex life), that were often erect. So when after stage one I was a bit disappointed that they kind of sunk into my breasts. So at Stage 2 (where they fix everything you don't like!) he added some tissue behind the and in the nipple and then they looked like they used to (headlights always on!) But a few months passed and they lost some of their vim and vigor.So at stage 2B he added some more and they look good again. That was almost 3 months ago but they still look good. Sadly, the erotic sensations in the nipple have gone away - I guess there's no way to avoid that (someday maybe) but the imaginatoin is a powerful tool and that's what I am starting to rely on. The trade off was worth it - my life is more important than nipple sensation any day.
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Someone asked about nipple sensation post surgery - so I decided to do a test with my husband last night. I closed my eyes and he touched different parts of my breast to see if I could feel it. It turns out I have full feeling in my whole breast and areolas, but the nipples are different. I can't feel any light touch at all but if he pinches or squeezes them I definitely can tell. They do respond to cold and air (getting erect.)
Before surgery I had very sensitive nipples (that were a good part of our sex life), that were often erect. So when after stage one I was a bit disappointed that they kind of sunk into my breasts. So at Stage 2 (where they fix everything you don't like!) he added some tissue behind the and in the nipple and then they looked like they used to (headlights always on!) But a few months passed and they lost some of their vim and vigor.So at stage 2B he added some more and they look good again. That was almost 3 months ago but they still look good. Sadly, the erotic sensations in the nipple have gone away - I guess there's no way to avoid that (someday maybe) but the imaginatoin is a powerful tool and that's what I am starting to rely on. The trade off was worth it - my life is more important than nipple sensation any day.
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DJ: 1) I had pain in the middle of my chest and still have some. Not sure where they connect the blood vessels but assuming it may have been in that area. I had pain above the breast because of fat necrosis that was very visible; hard raised lump. 2) sorry not a hipster, 3) breasts did not feel warm, but they were soft, 4 & 5)) I took pain pills while in hospital and one week post op after stage 1. I really do not like taking pain pills because I have bad constipation which starts from the hospital. I lowered my dosage by taking half of the pain pill. I would take it in the day while I moved around and not at night. Took benadryl to sleep at night for about a week. After I got home, I was totally exhausted for a very long time.......... probably 6 weeks. My body was very tense and tight at the shoulders and back. I couldn't wait to sink into my recliner every night as it was the only way to release my tense shoulders and sleep things away.
Downey: My husband loved NOLA. He loved the food, the wonderful nurses, and enjoyed watching t.v. and just lounging around in the big room. I don't know what room I had. There are also snacks available for free like pudding, icee, coffee, etc. that my husband enjoyed. My stage 2, I had a smaller room on the other side of the hospital that had a wall. But, I only stayed for 2 nights and I was mobile. I think they try to give Stage 1 people the big room because you are in longer.
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DJ-
1. I didn't have any constant pain but had sporadic pain underneath in the crease.
2. I have pain from the pulling on the stitches (one more week to go, 8 weeks total). I use wash clothes to pad around the drain and between my skin and the tubing.
3. Normal warm never hot.
4. I didn't really need pain killers after the hospital. I do use them before bed to help with sleep and staying on my back.
5. I was exhausted too. For me it is getting better slowly but surely.
Good luck, warm thoughts.
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Hi Ladies,
HELP! Having a very bad day. Didn't sleep and lots of pain last night, and it feels like I have the Hindenburg gas balloon exploding in my stomach. Still in NOLA. They are giving me milk of magnesia, another gas tab, etc. but I am still in so much pain. I can't eat, I can't walk, and I am in tears. For those of you who had DIEP, how long does this gas last? What did you do for it? Thanks-
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