NOLA in September?
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Sausage talk!! LOL. I was so swollen in the legs after stage 2, that I could not recognize my legs as MY legs. I'd look down and think, who'se legs are these?? It took a couple of weeks to get back to normal, though I remember one night running to the bathroom multiple times, and I think that was the water all coming out!
Besa, I will add your date above. Welcome!
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Here comes Besa! We thought we had a break this week, but she's joined us!!
Sept 21 - Besa - unilateral prophylactic hip flap (previously had unilateral DIEP). Dr D. and Dr. Stollier, NOLA.
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Welll I got my drains down to 18 and 23cc today so I yanked those babies... Jeanine told me I could if my numbers dropped... I just couldn't take it any longer... YEAH!!!!!!!!!! Drainless after 8.5 weeks.
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Woohoo Betsy!!!! Free at last!!! After just 4 days in this garment, and that is without drains, I admire you even more for going through all that you have, and so graciously. I wish you continued healing from here on out!
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Besa - Welcome! I could have worn regular over the head shirts after my stage I but I found that the drains were less apparent under button down or short sleeve zip sweat tops.
Betsy - Congrats on finally losing the drains! It must feel great after all this time.
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Free at last, Betsy!! Free at last!! What Amy said!!! For me, this is when I turned the corner...
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WoW! Drains out! Must be an amazing feeling! I remember the conversation about some being more juicy than others. Is that why you had drains for so long? Well, celebrate as much as you can!
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Besa, Welcome! It sounds from the many responses that you've gotten so far that we'd have a mountain of unworn button downs if we threw them in a heap! After my BMX with tissue expanders placed (elsewhere) I could not easily lift my arms and wore soft stretchy camis that I could pull up from the bottom and button down shirts, for a few days. That does not seem to be the NOLA experience so may be about the barbarian PS I went to, or to the tissue expanders. I bought more shirts, (nesting, I guess) before my DIEP, but didnt go near them --or 90% of the other clothes I brought with me, for that matter! Well, maybe Ill wear them for round 2 to cover the nipple guards or soak up the bacitracin... If oversize button downs ever come into fashion, guess we will all be well supplied. About the black bra that you will wake up in, and wear for several weeks -- it is cut pretty high so will peak out of anything low cut, and also has pretty wide straps. Fairly comfy though, and dries quickly overnight . Be sure to get 2, though since you sleep in it. Unlike some others, I liked the drain pouches. I had some smaller ones that I got on-line. Again, nice to be able to rotate to clean ones every day. I found that they were easily concealed by hip-length tops. As for panties and bottoms, anything above or below the incision worked well. So, granny panties or little bikinis. I have never liked pants that were tight around my tummy, so I was able to wear what I already had -- yoga type, sweats, drawstring waist, etc. I think it helps to hear some different takes on all this. Glad you found this site. Just imagine a huge room packed full of women cheering you on. Now you've got us!
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I still have my one drain
It was in the mid-30s, then I went to a wedding on Saturday and it went up to 50. I think maybe this one drain is doing the job of 2 since the other one quit pretty early on, which sucks because I'm still held to the same standard for pulling it. Ack. Maybe this week (week 5!?!). 0 -
Those of you with LE concerns, please ask the Center how they can help manage it while you're there! I would hope that someone there besides Dr. Massey is LE certified, since they're doing surgery for severe LE now.
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KBodie... I had HIP flap surgery in July and usually the hips produce more fluid and having drains for 6 weeks is not uncommon... BUT then I had a DIEP flap surgery in August and my output doubled for my hip drains, and took a couple of weeks to get back to where I had been pre-DIEP... but 8.5 weeks is still a long time. Also, my compression garment was not tight enough in my opinion and kept slipping down, so maybe there wasn't enough compression on my butt incisions, so the past few days I was putting 3 folding ABD pads against the incision to increase compression... I also was wearing the girdle (with the pads) and a spanx-type garment on top of that while I slept... Sounds tight and uncomfortable, right? But not so bad.
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Anne... They have a LE specialist (Jen) and everyone meets with her before surgery to get a baseline and then she comes in for massage after surgery....
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Wow - I was out of town for a few days and missed like 4 pages! This is an active thread!
KathrynLA - I wish you the safest travels and the best surgery and the fastest recovery. You deserve it! This will be the last one (it has to be right?)!!
BDavis - Same to you. I hope that this D&C and then your Stage 2 is the end of it for you. You have just kept going through this and you are such an inspiration - but enough is a enough!
TooMuch - I will be in NOLA Oct 15 - 20. I would love to meet up. We are staying at Monteleone pre-surgery and Hotel La Marais post-surgery. I have my pre-op Monday (Oct 17th) morning and two hours later I have my surgery! It will be a whirlwind. So I'm having my surgery on Monday and leaving NOLA first thing Thursday morning (my son has a senior soccer recognition event that afternoon that I really want to be at).
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Brenda and Sandy,
Me too, me too! I'd love to meet you both.
Healing vibes to all who are recovering.
Waving to all! Your stories and conversation help me a lot.
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I can't remember who asked about getting the Bacitracin off of your clothes - I have the solution! Dish washing detergent is what you want to use. You know the slogan, "Dawn takes grease out of your way"? Well, it really does... but so does Palmolive. And I am sure there are many others that do. Just squirt some right on to the stain and rub in, wash and voila! No more grease stain! I didn't have to throw out any of my shirts after nipple reconstruction - and there were plenty of them that got Bacitracin all over them!
Also - I don't know who has been down there for surgery recently, but I believe that those with established lymphedema are now getting wrapped for surgery. Double check with your nurse prior to surgery, but I think that is now standard protocol.
October ladies - I may or may not be there from the 20th to the 24th. Will let you know when I figure things out!
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Nordy --
I don't have lymphedema (Thank you Lord!), but I was wrapped as part of the standard prep for the surgery -- looked a little like I had had a Popeye or Incredible Hulk arm transplant, but it worked. Also received instruction and materials for wrapping for the flight home though I do have an Under-Armor that my sister who is a Lymphedema specialist and PTA recommended for flying. Put that on with the "Iron Maiden" lower and the leggings and I WILL be a sausage!
@ Betsy -- Sorry to hear of your additional troubles, but envious as all get-out about the "Drain Freedom"!! I'll get there!
Tentative Stage 2 set for 12/20 w/ Dr. D. Have to wait for ins. co. blessing. They have said, barring complications, I WILL be home for Christmas ... yeah, and in WNY we're talking no blizzards, too! Strange journey and so glad you have all been there.
Good healing, all!
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I believe that NOLA wraps your arm if you have had nodes out (or are having nodes out in that surgery) for all surgeries whether you have LE or not.
I had my mastectomy and DIEP in June and this included node removal. I met with Kristin an LE PT at NOLA during my pre-op day. She gave us an overview of all she would be doing as well as a course in LE 101. Everything to look for, what to avoid doing, etc. Excellent info. She was there the morning of surgery to wrap my 'node' arm. She came by my room each day I was in NOLA to give that arm an LE massage. She also gave me an LE totebag that had all of the supplies I would need to wrap my arm for flying home and a binder with the LE information written down. I used the totebag to bring all of my supplies home (the ABD pads, Bentodine, etc) and will bring it back with me when I return for Stage 2 and my arm will be wrapped for that also. I do not have LE - this is all precautionary.
I believe that this is from Dr Massey's research and NOLA is being VERY pro-active and really trying to educate and plan for not getting LE if at all possible. Dr Massey was not my doctor - Dr Dellocroce is. This is a big expense if you ask me and on the forefront of LE research and education - this was another reason why my husband and I really liked NOLA.
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Been freaking out this last few days...just coming here and reading really calms me. Thanks ladies. You are making me stronger than I am.
Edited to add: Just Laura, My stage 1 is on the 13th...I may be in the hospital still when you are there? Would love to meet and greet you and anyone else who is there
lisa
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For sure Lisa - I would love to meet up too. When are you discharged? We will be at the center Monday the 17th (for my pre-op and surgery) and could maybe stop by that morning - or if you are still at the Center on Tuesday I could stop by then before I get discharged. I'm expecting I'll be pretty mobile since I'm doing Stage 2 - I hope I'm not disappointed.
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NOLA does have a new lymphedema program, for everyone who comes for surgery... I had flown a few times after my SNB by the time I got to New Orleans, so I met with Jen, she discussed symptons and solutions, but I was not wraped for surgery nor for flying, but she did come and massage my arm a few times.
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I haven't had nodes removed, no bc treatment, but because they give EVERY patient LE education and wrapping they just sort of randomly chose one of my arms to massage and wrap. It was a little weird, given that I had zero (or very little) risk of LE. If anything, I might have a tiny risk of truncal LE from the mastectomies, but that's it. I was hoping the wrapping would make that one elbow not sore after surgery, but no luck, they both hurt like hell for weeks. So... it's good they are proactive, but a little strange that they're proactive with people who don't have LE or a risk of LE.
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And yet, I did have two nodes removed and they did not wrap me... for any of my 3 surgeries.
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bdavis, Yeah on getting rid of those drains!!
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NOLA told me that they were doing the LE wraps for everyone that had nodes out or were getting nodes out. I guess that they are hit or miss on that.
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Strange, when I was there for my stage 1 in May I met with both Jen and Kristen - my surgery was prophylactic but they did a lymphedema risk chart on me anyway. It was a series of questions that determined my risk and I was given a rating of 4 I believe, out of 100. That was for double mastectomy as I was told it was likely that nodes would be removed when the breast tissue was removed. I did not have SNB - Jen wrapped my arm during my pre-op and again before surgery and came the day after to do the lymphedema massage. It was explained to me that they were doing with all patients going forward.
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Well.. I had surgery in July and 2 in August and no wrapping... Maybe since my nodes were taken in December 2010 and had flown 7 times (NOLA in May, Charleston in June, and St John in March and then back to NOLA in July) without incident and had no symptons, they decided against it...Jen said that if nothing had happened the likelihood was low... this was in response to wrapping for flying... and they were well aware I had nodes taken... I got the green tattoo across my good arm (that was new in August.)
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Hi all. Sorry I disappeared for so long. As Dana said, I had some unexpected events like a bad EKG in post-op, low blood counts, and other fun stuff. It seems to all be a reprise of preeclampsia issues in my first pregnancy 16 years ago. Whouda thunk it? Anyway eventually it all resolved and I got to focus on having a more normal slightly miserable recovery. Lots of soreness, fatigue- all part of healing and tolerable although not super fun. On the plus side, the nurses at the Center really could not be better. Very warm, caring, extremely competent, and very quick to respond. They were all wonderful. I spent the most time with Karin and Charlotte and so appreciated them both.
Surfa- are you still here? We are also Homewood Suites. Amy - it was really wonderful to see you and your husband although I don't remember much at all of our visit post-op. Darn drugs. I am glad your trip home was okay. Besa, I am here till Fri and would be glad to help however I can. And Betsy. No drains!!!! So glad for you.0 -
Haha, Running, don't worry about not remembering much of our visit. I had the same thing when Jerusha visited me after my stage 1. I just remembered her wearing this floating kind of thing and me feeling really pleased that she came in. Couldn't remember a word of what we said! Glad you have surfaced, and are well enough to have moved over to Homewood Suites! Thats a step in the right direction for sure! Charlotte was one of the nurses that took great care of me after my stage 1 - she is such a sweetheart. They all are, really.
So question for you stage 2 lipo veterans - how do you know if the girdle/dom is too tight? I have gone off my pain meds during the day because I felt so queasy, and I seem to have less nausea today, so I am thinking that was the problem, and not the antibiotics or the tightness of the girdle. But when I spoke with Jeanine, she did offer to send a new girdle if I felt this one was too tight. Well, yes it is tight, but it is supposed to be. She said I could also open the hooks on one side, but then I am not getting much compression at all. She asked if I had deep red marks when I removed the girdle to shower, and I do have marks, but I am not sure how deep "deep" is, or how long they would last if I left the garment off, because of course I put the clean one on as soon as I shower. Yes it is uncomfortable, but then I expected it to be. Am I doing any harm if it is too tight? When would I expect it to feel a bit looser? I will post over on DIEP Stage 2 as well, I think. Right now, having a bit of a hard time picturing being in this thing for another 3 1/2 weeks. . .
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I couldn't wear the Veronique compression garment, had to switch to Marena. I tried when I got home but about an hour into it I had a panic attack (seriously) and had to rip it off. I think the top of it constricted me in the wrong spot. I felt like I couldn't breathe and couldn't swallow. I was also having nausea issues, from the antibiotics.
Have you checked the Veronique size charts online? You can measure yourself and see if you're in the wrong size. designveronique.com/cgi-bin/ic/dv2/fitting_size.html
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I asked for post-op visits for all 3 surgeries. Just made me feel better since I could not "pop in", as a local would, and I did not have established docs in my area I felt comfortable with. They were more than happy to work with me regarding that. It just felt better to me. Also, at my last post-op, my dh and I had such sincere thank you's to give out. We felt like we were saying good bye to family, nearly. What a chunk of our journey of life!
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