NOLA in September?
Comments
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Sandy... about Dr Stolier... are you sure about that?? He recently left Omega and came over to be with the PSs... and his phone number is the same as the Center.... I even had to have my records sent from Omega over to him...
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KSue, So sorry you so uncomfortable. I also had pain after having the balls removed. Took the pain meds and forced myself to walk around. It does get better. I know you wonder if you will ever feel like your old self again and I can assure you that you will. Sending healing hugs. Packing to leave tomorrow and fly to Nola Tuesday.
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kSue- The first thing I would do (if you haven't already) is call the Center or SCSH right now (the phone number they give you to call) and tell them that the pain is not being controlled and talk to them about the other issues. It doesn't matter if it is the weekend - call them. They can change your perscription or dosage or combine it with another medication. I would also just to be overy cautions check to make sure the perscription is what it should be - that there is no error by the pharmacy or the docs. The pain should be controlled.
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Karen - so sorry you are having so much pain! Downey30 amd Besa are right. Keep communicating and advocating for yourself until things change and get better. And keep us updated when you can. I'll be praying for you today!
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Jane 123 & Nordy- Thank you for all your insight. It is GREAT to know this about the activities. Way to GO Nordy!!!! I know the healing process will take some time but to hear your stories about resuming activities is reassuring. Last year my sister and a couple friends did a mud run called Dirty Girl. Sounds funny but it was a ton of fun. It was a 5K and made for all fitness levels. A portion of the funds go to breast cancer research as well. They are starting to pop up all over the country. Lots of laughs and fun. I signed up again this year just not sure if I'll be able to do it as I'm still waiting on the insurance stuff. If not there's always next year! Here's the website if anyone is interested www.godirtygirl.com. It is a very uplifting event and they hand out Cosmos to all participants after you cross the finish line.
I asked the Center about weight loss/gain as I too was concerned about it. They advised not to do anything different than my normal routine--not to gain or lose weight and maintain good nutrition. My local docs also recommended implants saying I did not have enough tissue. One doc told me he could do hip flaps and then went back to saying he preferred to do implants....hence my journey to finding NOLA.
I just have to reiterate how great this thread is! What a great support system!!
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Bdavis....thanks so much for posting about scars. For a long time I couldn't convince myself to scar another part of my body for a second try at reconstruction. I haven't even had my original SGAP donor site revised yet and it's been 3 years. Friends and family think I'm nuts (well I probably am, but that's for another thread, lol). Anyway, this quote, from one of my favorite novels gives me comfort and helped me make this big decision. I'm going to carry this with me to NOLA. Reminds me of The Scar Project.
...."We must see all scars as beauty. ....Because take it from me, a scar does not form on the dying. A scar means, I survived."
From Little Bee by Chris Cleave
Here's to survival, ladies!kSue, hope you're feeling better soon. I've been where you are, it does get better!!! Along with the scars, memory of pain also fades.
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Post-oppers, It is so difficult. I know. I would not have been positive about what I went through if someone would have asked me in the first few weeks post op. I thought I had really made a bad decision. I did not get on the boards, I just sat at home feeling like I was much weaker than the other women on this thread. I needed so much help bathing (I was afraid of showering - too unsteady on my feet), getting abd padded, dealing with drains, dealing with an issue from the pain ball, etc. But I healed. I felt like Frankenstein with my nearly total waist incision and I referred to my breasts as rubber chickens. I did not look at myself in a full length mirror for a month. I now really appreciate my breasts and have adjusted to the rest. The yuck will pass. Visualize healing, picture your body knitting itself back together little by little. Your body IS healing, it is just too small for you to see yet.
I am petite but NOLA found enough fat on me. I sent the photos, per their directions, and they got back to me with a plan. They did tell me on the phone that if there really was not enough tissue they could supplement with implants. I was apprehensive as I did not want implants and I pinched myself until I was about bruised trying to isolate my fat! I asked if I should try to gain weight and was told to come as I am, at my "usual" weight. I cannot speak for what they would advise someone else. I noticed that at 3 months post op my chest is a little smaller and more rumpled (?) looking which I think will be fixed at stage 2 with some fat grafting. I am trying to gain a little fat to see if that will help with the breast indents, future fat harvest, and so I have a bit more stores going into the next surgery. I get really ill from the meds. While I was at NOLA I mentioned I was concerned because I am not very big and, gratefully, was told that they had done this surgery (edited to add: the Body Lift) on several other women who were even smaller than me.
Nordy, Congratulations on finishing a tough competition! Boise just hosted an Ironman 70.3 yesterday and my husband & I went out to dinner Friday evening and saw a bunch of happy athletes eating their pre-comp. dinner. We felt like we were in the midst of a Title9 ad!
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Hi Betsy,
Yes, I am fairly certain about the accuracy of what I posted. I guess you could contact the Center to verify.
My sister lost a lot of weight after she had her consult with Dr. D, so even if she'd been borderline at the time, there is less fat on her now than ever. She has had cosmetic implants for about 20 years and they are big---she will not be able to replace them with her own fat. I thought about offering to donate when Dr. D said he couldn't find fat on her. There was a twin sister years ago who donated fat when her sister developed cancer. I'd still be willing, lol. I guess that going down in breast size would mean more scars...I can't remember if that was discussed, but my sis is pretty vain so I don't think she'd accept that option. I know that the docs are usually able to find fat on thin women...she's just one of those few that don't have it and the implant size complicates the issue for her.
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Document-I'm leaving NOLA on 7/12 and would love to meet up.
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Ksue- I hope you are feeling better today. It will get better!
Sandy - I am sorry to hear about your cousin. I hope you have a great mini reunion!
Jane - I wish you would have called me when you had it so hard after surgery! I remember feeling like such a loser when I read all the stories on the threads about people going to the Quarter and walking around after their stage one. I felt like poo! Having said that, I did walk from the end of the St. Charles trolley line back to the Hope Lodge, so I guess I am not as wimpy as I felt... But still!
For all of the women who are having surgery or have just had surgery - The reality is, we all have different pain tolerances, we all perceive pain differently and we all react to anesthesia, surgery, etc. differently. So do not feel sad if you are having a rough time! Just know that it will get easier with time. Hang in there!
Pinkheart - I think I can relate somewhat to what you have gone through. Although my expanders did not extrude, my rads side was clearly visible through my skin. When I had surgery to remove it, the PS said it was sitting right under the skin that it had caused to thin and it was no longer under my pectoralis. My once nice flat scar had turned into a concavity where my ribs were easily seen - damaged from the expander. I thought it might be a big issue to fix it - Dr. Sullivan didn't even bat an eye. This is what they do... And they do it SO well. You will be great.
And thank you everyone for the kudos on my tri yesterday! I am still hungry... Lol... So I better go find some food!0 -
Thank you Tamara for saying that!! I haven't been on here much either as I haven't been doing as well as others and still need more help than I thought I would. I still have 3 drains in, but I think I will be able to pull my right breast drain tomorrow. I am having some serious circulation issues, so I plan to call the center tomorrow. I am still hurting and so weak, but I know it'll all get better.
I was asked by a friend on when I am going to do stage II and I think I am tentatively scheduled for September 7th, but can't focus on that right now.
Hugs to you all!!
Chelle
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Oh, That's Awesome Nordy about your tri!!! Absolutely amazing!! Congrats!!
I do feel like a wimp and still need my pain meds and with all the swelling and circulation issues, I just can't really do much of anything
I can't get comfortable with my hip/butt incisions and this girdle.I remember a ways back that someone mentioned cutting the top of the girdle so there wasn't so much material. Is that correct?
Chelle
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Hi Chelle, I am curios about the girdle. I have absolutely nothing on my butt wound, not even a bandage! Same for my breasts , just a thin Velcro bra thing. Just a diff in docs u think? Finally walked a bit today, and a shower !Nordy is right, we are all so different, and this is hard, you are NOT a wimp.. Thinking of you.
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Nordy ~
Your response and trust in docs really lifted my spirits - thanks!
And congrats on your tri yesterday - you are one awesome survivor. Meanwhile, I'm going to kick butt to start back up with daily routine of WALKING three (wow) miles.
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Chelle.. It was me who cut the top off... I literally cut off the wide waistband (about 3 inches)... do note though that you are also cutting the zippers, so when you zip up, be careful not to zip the zipper right off... That happened to me a few times when people were helping me.. they do go back on, but still.On one girdle I stitched the ends of the zipper line so they wouldn't come off, but then got lazy and didn't do the other one... Just double check with the doctor before you start cutting.
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Nordy, LOL about feeling like a big loser for not really doing anything fun!!!!!! Was just saying to my sister that most people do much better than I have. It rained this weekend and thought it would be a good excuse for not getting out much. But honestly, by the time I empty drains, bathe, and do the betadine/bandages, I need to rest.
I ended up seeing Dr Trahan today for several issues. I was concerned about water retention -- my torso looks like Humpty Dumpty. I was also worried about the twinges I was feeling. I know they'd been mentioned before but it was shocking to sniffle and feel a twinge in my breast. Or to move my right arm and feel it in my left breast. So I needed reassurance that something bad wasn't happening.
My sister asked if I was still OK about my choice for flap reconstruction and the answer is still Yes. I know the most difficult part will end within the month.
Sending hugs and healing thoughts to KSue, Chelle, Esmerelda, and everyone else who is still healing, both physically & emotionally.0 -
I think all you gals are rock stars! Just rest and take care of yourselves -- you can drink Hurricanes and wander the Quarter another time! I appreciate you sharing your struggles and letting those of us who are up next know about all the ups and downs.
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Thanks Betsy, I didn't think about that. I don't zip the thing the whole way up as I am under 5'0 feet tall and it's just so uncomfortable because when it's zipped it hits my breast incisions. So, I leave a few snaps undone and then fold the rest over and it's just a lot of extra material.
Wow Cascader, I have bandages everywhere
It is amazing how different everyone is. I think the circulation and swelling issues I am having is making things more difficult. I am so glad you are doing so well!! Thanks Jenifer!! I will be calling the center tomorrow with a million questions it feels like. I haven't done much at all, but hoping within the next week or so that'll change. You are not alone with that...promise
Sending healing hugs and thoughts your way too!!0 -
Chelle.. I am 5'6" and it was too much extra material for me too... that's why I cut it... when they sent me a new one that was smaller, I didn't cut that one only because I had since had a DIEP too... and wanted the extra compression. I was glad to get rid of the extra material, but the exposed zippers could get scratchy, so maybe think about that prior to cutting. I do agree the bulky material is uncomfortable.
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I have a few friends that are really good with the sewing machine, so I was hoping they could "modify" something, but we will see. I am just so HOT through my middle and sweaty and with the circulation and swelling issues my legs, feet and sometimes hands are freezing cold. Thanks for the advice Betsy!! I also think getting rid of the breast drain and not having that tube hanging will help a little too...hopefully coming out tomorrow. It's still bloody, but the output is there now to come out.
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Chelle, honestly I think I would feel better having them bandaged with a little compression. My bum is pretty sore and some extra padding would help. Hopefully they can get your swelling and circulation under control, you should feel much better then. Have a restful healing night.
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Cascader, I have the girdle which doesn't really pad my bum but I have ABD pads over the incisions and the girdle just holds them in place.
Hope you have a restful night too!! I am actually about to head upstairs now and get tucked into my "cocoon" for the night. Still trying to get used to sleeping on my back
with my arms not compressed against my breasts.Good night all!!
Healing hugs to all!!
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Cascader... can you ask about compression?? You can buy a Marena girdle if they say its ok...
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I'm at Hope Lodge. The room remodel is gorgeous! I drove in. With less than 30 minutes left of my drive, the highway was shut down. After 2 hours, I turned around on the highway. 1 1/2 hours later, I finally arrived! It seems a suicidal gentleman took out a gun on the highway (4 miles up from me). HUGE highway shut down. I think he's still out there. I missed finding something for dinner (I'm beat), but I will find a gooood breakfast!
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Today my grown son of 22 was home for the weekend and came to church with us. Part of the sermon was about recalling a meal that stands out in our minds as being special. I really didn't think he would give it much thought but this evening we were in the car on our way to a graduation dinner for our very close friend's daughter. He shared a story about one of his favorite meals that stands out in his memories on that car ride. When I was going through chemo and surgery, I really had a hard time combatting nausea. He was only nine then and his story was about a parishioner from our church who brought my family dinner. She brought a pot roast in a crock pot with all the fixings including gravy and a bread basket loaded with fresh dinner rolls, home made cookies and chilled jello. It wasn't the meal that stood out in his mind the most but the special memory was that I came to the table and ate that dinner smiling with my husband and kids. The moral to the story for us is that you will forget the hard parts and move on. Do the best that you can for now and know that it will get better. Most importantly, know that those going through it with you will remember the best parts.
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I'm shortwaisted too but it never occurred to me to cut off the top of the girdle until someone here mentioned it after my stage 2. I just folded down the top in the front and never zipped it all the way up - a lovely look. I did trim them after stage 2 and promptly pulled off the zipper tabs. I haven't worn one at all for days now.
Chelle, so sorry to read you're having a frustrating recovery. It WILL get better. I think you know that. Feel free to vent here!
I've been one of the ones to post how well I've been doing. Honestly, my thought was to give hope and encouragement, not to make anyone feel bad! I've been lucky to have almost no complications, but I certainly have had my down times. Yeah, I walked around the French Quarter, but then the whole next day I lolled in bed. For all the early successes there have been many days of catching up on rest. I tend to look on the positive side and try to ignore the downs as much as I can. Maybe that's given a false impression. I'm sorry if it has.
Even now I'm on a pendulum swing. Things are good. I played a 3.5 hour gig on my feet last night and it went fine. But I was sure worn out after and have taken it pretty easy today aside from my improv class. Just hang in there and believe that time is your friend and your doctor. I wish I could speed it up for you, but we're all time travelers zipping into the future at the rate of one minute per minute. Looking back you'll be amazed at how the minutes pile up.
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Eva, I love the "one minute per minute". That is awesome!
Nordy, question for you. I've found that swimming is one way to really stretch myself out and arch a little, which makes it easier for me to feel where my abdominal scar tissue is. The scar tissue from my waist up is thicker and tough for me to do anything with, but if I stretch and then rub my DIEP incision in circles, there are definitely stinging pains. Does that mean I'm breaking it up? I need to start again with my chiro, because he was making good progress on the rest of it.
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Eva, How is the fat grafting working out? Did it stay in the breast divots or is it too early to tell? Do you have decreased sensation where they lipo'd?
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I think it's too soon to say about the fat grafting. It did smooth out the divots so far and looks good. I still have that lump at the top of my left breast though it doesn't show now. Dr. D said it was not necrosis but just the edge of the flap and that he'd try to break it up. It may be a little smaller. I suppose I can live with it as long as it doesn't show through the skin (it's high enough that it would be above the neckline in many of my tops). I can see the lump and the divots on the left if I flex my chest muscles - especially while leaning over. But it doesn't seem like something I'd want to go another round to try to fix though.
I don't have any decreased sensation in the areas they lipo'd. In fact my thighs are still kinda sore - and still puffier than I hope they'll be. I do have numbness between my belly scar and navel. Some of the numbness I had before below my hip scars is fading.
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I have the mini trenches as I call them down the front of my breasts especially when I flex or lean over. Not noticeable at all when I am clothed. Am hoping that these will be filled in at stage 2. Am still trying to decide on the breast lift... I have some hard lumps but I want to keep them so I do not lose any volume. I am relieved that these details are all that I am pondering at this time. I am praying for all you girls that need other treatments!
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