Charleston Bound, part 2

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    Starting BRAVA tonight!!!


    Off to buy blister bandages first. I will be looking like a Dollyish Madonna and need to find a button up top big enough for those domes!


    The "turbo" pump/wound vac arrives tomorrow. Dr K had a little trouble getting one but came through at very last minute. Surgery in two weeks!


    Catie, are you staying at Homewood?

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  • lbrewer
    lbrewer Member Posts: 766
    edited November 2013


    I just found this study Dr. Massey is doing:


    http://clinicaltrials.gov/ct2/show/NCT01273909?term=lymphedema&rank=7

    Outcomes After Perforator Flap Reconstruction for Breast Reconstruction and/or Lymphedema Treatment


    says invitation but not sure how that works

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited November 2013


    Many of Dr. Massey's patients elect to participate in this study. I believe that some NOLA patients also participate as the doctors there are also involved in the National Lymphology program. By invitation means that a patient is invited to participate. I am part of the study.

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  • 5andcounting
    5andcounting Member Posts: 232
    edited November 2013


    Will get to do stage 2 on November 11! Counts finally up. Thank you wheat grass.


    We are getting into charleston on Thursday and staying at Homewood. Looking forward to a long weekend of fun before surgery.


    Does anyone have any idea how long recovery is from stage 2. I have a good bit if fat grafting to be done and they estimate my table time at 4 hours. One night hospital stay. I want to go back to work the next week but not sure if ill be ready. Any thoughts?

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited November 2013


    Give yourself a week of recovery and you should be fine - just bruised. Unless they will be adjusting the ab incision or moving the breasts and have to use drains. The drains usually come out quicker - my breasts were about 3 days and hips were 10. The table time doesn't influence it as much as the procedures.

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    CRS,


    I second what Marty said. My next surgery on Nov 15 and supposed last (#10), is just fat grafting only and four hours on table. Finally, a surgery without drains!!! I'm ready for a break since commiting to this Brava device.


    I will be arriving in CHS late on Nov 10. Please let me know if you would like to meet. :)

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  • 5andcounting
    5andcounting Member Posts: 232
    edited November 2013


    Thanks Marty and Pinkheart!! Pink, would love to meet you. We will be at homewood on Sunday -maybe we could meet?

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    Catie,


    Looks like I get to sleep in the day of our surgeries, so you must be first up.


    My surgery is at 1:00 pm and need to arrive at 11:00. Where I'm staying in Summerville is 45 minutes away so I'm glad to not have to get up at 4 or 5:00 am. Smile

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2013


    I just arrived in Mt Pleasant for my appointments tomorrow, Pink. 6.5 hours in my car but listened to a book on my iPhone so time went by quickly but glad to be out of the car!


    Can't wait to see what Dr K's plan is next, I wouldn't be upset if it was: "looks good you are done!!!" I can wish, right? I'm thrilled at my progress so hoping I'm done can't hurt!


    Will update when I get home, now to get something for dinner.


    Hugs


    Catie

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  • bethcw
    bethcw Member Posts: 98
    edited November 2013


    Had a great visit with Dr. Craige and Kim yesterday! I am 4 weeks out, drain free, and it looks like this PAP flap is going to hang around :-). Life is good. Wishing all you ladies coming up on the schedule (whether you are listed above or not) all the best!

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited November 2013


    congrats Beth! So happy for you.

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  • lbrewer
    lbrewer Member Posts: 766
    edited November 2013


    I was going to post my stage 2 dates but can't remember how :(

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited November 2013


    lbrewer, you need to PM jeskachi. She is the thread owner and can post them on the list.

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2013


    Beth, so sorry I missed you! By one day it looks! I had my Dr. B appointment and my Dr. K appointments yesterday! WooooooHoooooo - I've graduated!!!!! I'm done!!!! Dr. K agrees with me, (and so does Chris :)!!! They look wonderful, I don't want nips - so I am DONE! D O N E !!!! with surgery!!!!! I couldn't think what else they could do so was hoping, but turns out I was right - so now bittersweet not going to book appointments with Dr. K anymore, but will probably see him to say hello when I see Dr. B yearly!!! Dr. Baron appointment went well too, so much confidence in his knowledge of flaps, SGAP AND PAP, so felt comfortable knowing he has the Oncology and Surgical experience to carry me forward fromt he wonderful Dr. K work!!


    Beth, so hoping your PAP gives you wonderful results too. I mentioned to Dr. B about wanting to get a reunion of sorts going every fall to visit and then have our annual appointments with him, he said to let him know when so they could 'do something for us' - sooooooooo - who's on board??? 2014!?


    So, I will NOT be up for Nov 15 as planned. The graduation for me will be complete when I get my tassles turned (or 3d nips done) by Vinnie, now to call Richie back and make the appointment. Probably April or May (as per my last conversation with Richie) but going to do it in Baltimore and no matter when it is - just I'm done!!!!!


    I so pray for all of you to have smooth going until you are done!


    Love


    CAthie

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  • lbrewer
    lbrewer Member Posts: 766
    edited November 2013


    Congrats Cathie! I can't wait till graduation. It seems so far off

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  • cascader
    cascader Member Posts: 599
    edited November 2013


    Beth I am soooo happy for you, what a journey you have had. I wish you continued healing. And Catie...Woo hoo, done!!! Congratulations. My 5 year mark since diagnosis is approaching in January, and I am actually starting to forget about all of it, treatment etc..never thought that would happen. So to those of you in the thick of all this, there is a light at the end of the tunnel. Until then be patient and kind to yourself, graduation will happen and you will feel whole again. I think a reunion of sorts is a grand idea....keep me in the loop. I finally booked my appt with Vinnie in Maryland, May 8th. Have been put on the waitlist for March. I originally wanted to go to NOLA because it would make for a more fun weekend, but they now want all OR reports, including pathology from all surgeries before they will make your appt. I had 8 surgeries, there is no way I am going to dig those out and relive all of that, so much easier to just go to the man himself in Maryland.


    Pink, this damn disease has taken so much, I have been thinking of you. How is the BRAVA going? Will you just be doing it until this next upcoming surgery and then be done with it? I am so hoping this will bring closure to this chapter of your life.


    Have a great week everyone

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    Super busy over-packing to leave for Charleston tomorrow. I'm driving and looks like beautiful weather with Fall color through the mountains. Then two days of beach walking and wine drinking before I gear up for MY LAST SURGERY! I think 10 surgeries is enough no thanks to BC. Someday I will get 3D nips. Cascader, thanks for the Vinnie at NOLA info. Will head East too.


    This BRAVA is rough. Dr Kline asked if I would talk to another patient considering it. I have irritation and bubbly blisters from the domes. Ouch! Putting tegaderm over them. Have to just suck it up and continue. The wound vac is heavy. But at least this all is supposed to only be a two week deal. Right Dr Kline? :)


    Have a great weekend!

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  • rdgc
    rdgc Member Posts: 93
    edited November 2013


    Beth: I'm so glad that your PAP flap seems to be working out. That's great!--rdgc

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    Good Luck tomorrow to CRS! I still hope to meet you?


    I'm staying at Comfort Suites-Isle of Palms tonight ($63=Medical rate). I wasn't planning on it but Dr Kline wants to see now Monday morning between surgeries so I wanted to be closer than Summerville.


    I sent him some eewy pictures of blistered and bruised breasts from BRAVA so he wants to see me now before pre-op on Thursday.


    CRS, when do you head home? You had great weather for your Charleston weekend touring. I really enjoyed my beach walk and sunset today. My friend is on her way to spend the night at IOP hotel and after seeing Dr Kline tomorrow we are going to lunch at Poe's on Sullivan's Island, sightsee and then dinner at The Fish House at Patriots Point or Shem Creek.


    We all like to enjoy what we can before these surgeries and recovery! Blessings to all with your reconstructions!

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  • 5andcounting
    5andcounting Member Posts: 232
    edited November 2013


    Thanks Pink:) I'm coming to the hospital at 11 am-let me know if you will be at Dr. Klines before then and we will swung by to say hi!


    Not sure when we will head back. Will depend on how it goes I guess. He's revising the abd scar so ill go home w a drain and there's a good bit of lipo to be done. Nerves setting in now but I trust him and the staff.


    Much love and luck to you!!!!!

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  • cascader
    cascader Member Posts: 599
    edited November 2013


    CRS sweet dreams and best of luck to you. Thinking of you and sending positive thoughts. Pink, hoping the blisters are not too awful, you need a break girl . You are in the best of hands, but of course you already know that. One of these days we will go paddle boarding with the dolphins I miss the staff at ECPS!

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  • lbrewer
    lbrewer Member Posts: 766
    edited November 2013


    the medical rate sure seems to bounce around! I paid 89!

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2013


    Pink, hoping all went well and you are still on for Friday? CRS - hoping all went well with you too! And for all of those coming up.


    I have to tell you all that it is so good to be done, and I thought it was almost impossible to say that, like that old saying : "All things seem impossible until they are done" - Now to get frosting on the 'cupcakes' and I'll be totally done. But for now telling people here I'm done. I decided it's no one's business but mine about what kind of frosting I put on my cupcakes - so will keep that part to myself. Funny how people just can't get it that it's a process and that it normally takes time. Would hate to put frosting on an unbaked cupcake!


    Hugs to all. Praying for all of you!


    Catie

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    Catie-- So true that people don't understand it is a process that varies with each patient.


    Surgery still on for Friday. He drained the blister today, patched me up and Rx for silversulfadine. I go back to see him again early Wed morning (when it's going to be crazy cold 36 and I just want to stay in bed!), and they are going to put Brava back on and will take it off in OR. I am not continuing with the turbo wound vac pump just small Brava pump. Turbo was torture for me. can't say for certain this is last surgery now ...


    Lbrewer-- Was that at Comfort Suites? I got med rate of $63 both times.


    CRS-- Hope all went great for you this afternoon. Did your surgery get delayed a little? I didnt see Dr K until 1:30 as his first surgery went longer. Let me know if you would like to meet for coffee or hot chocolate on Wednesday.

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  • 5andcounting
    5andcounting Member Posts: 232
    edited November 2013


    thanks to all for your kind wishes.


    Pink, I knew he was seeing you while I waited so it made me less irritable with the wait. I thin we started at 230 and I was in recovery til 9 pm. Having a lot of pain management issues. He revised the scar and I still have post Sx nausea and pain. I had planned to return to work next week but now I doubt it.


    We've already left to go back to ky. I think we made a mistake as the ride is long and painful.


    Catie-glad you're doing well! Cascader? Thanks for your kind thoughts.


    Getting tired-time to nap for a while

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2013


    Yikes, CRS - cannot imagine traveling home so soon! Hope you made it ok? The 6.5 hour trip home to Atlanta after surgery for me only works with me sleeping most of the way - and that was at least a week later!


    Hoping every day is a better day!


    Hugs


    Catie

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    CRS,


    Sorry I missed you and especially sorry you're having pain issues. Did your DH and DD come with you? Rough driving home so soon but you will be more comfy in your own bed! Please let us know how you are doing with recovery. Blessings!

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2013


    My surgery is still on for Friday at 9:00


    Had another appointment this morning with Dr Kline. My blister wound was still open and bleeding/oozing but not infected. Still treating with Rx silversulfadine. Dr Kline did not want me to put Brava device back on at all. :(



    So I guess the hospital staff won't get a Friday morning laugh if I'd made an appearance wearing those Superdomes, which they would never had seen before. Just having fat grafting surgery which will only be four hours. No drains, but will have to give myself Lovenox shots after surgery. ...



    He said I need to keep eating and in Spring try Brava with fat grafting again but only with little pump. No more turbo torture though!



    ... Also said he would like to do more actual surgery (cut and sew) on my radiated breast, especially my IMF-inframammary fold to make it look normal. We both know it's ugly and a challenge. Still, if you were to see my timeline of pictures starting at Dx and through 10 surgeries, you would agree that he has done miracles.



    He says he wants to wait and do surgery again on my rads breast in TWO years though because I still have too much radiation edema issues. :(



    Guess I really do need to move here!


    Done with beach and wine. Off to drink my Miralax cocktail. :)

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  • lbrewer
    lbrewer Member Posts: 766
    edited November 2013


    i was planning on driving home the day after my stage 2 surgery in Jan. Is that realistic?

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2013


    I'm glad I didn't, not sure what works for you though, I just wanted to be close by Dr K to make sure all was progressing, I get cloudy on what I'm told the day of surgery - so I need the extra time to ask questions and make sure all is well and just in case of complications. But we are all different. Age, body type, and stamina and comfort level. I'm comfortable spending a little bit extra time close by and being sure when I go home.


    You know how you react - hope it works out well for you.


    Higs

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