DIEP 2013

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    SBE, glad one problem is almost solved. I really hope the other foob doesn't cause you a new problem.. Keeping my finger's crossed.


    Lahela, same to you. One problem almost solved, and another one pops up! I wish you both good luck getting everything sorted out.


    Dvygirl, I know you asked Bailey, but I had a hysterectomy several years ago and they did it laproscopically. You can't even see the scars. You would be hard pressed to find them.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    dvygrl - I am a scarrer....just what my body does ....takes a long time for mine to turn white. BUT....lapro scars were small and do not appear anywhere on my flap. I do have stretch marks on it from my babies stretching my belly, though! Actually diep surgery got rid of both my c-section scars, and several of my small lapro scars....So I have a small number of scars.....but they are much much larger (around noob and across belly).....mine total 46 inches, but I was cut from cheek to cheek lol....and since I was a delayed DIEP I have a very large noob scar.....and around my belly button....and the lift on the right, too.


    Debdylan so happy you found your look!

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2013


    Excuse me breaking in here, but we are looking to show your faces, names and quotes at our fundraising event in October (www.rockforbreastcancer.org), and would love your help. This event is one of our largest fundraisers of the year and we'll be joined by hundreds of generous donors.


    Specifically, we will have two projector screens up during the event, and want to show the people attending the event YOUR faces--- the women of our community, the women who use and rely on BCO ! Having the opportunity to share your photos and quotes that night will reinforce to our donors, in a meaningful and personal way, just how vitally important their contributions are to our community.


    For this, we are looking for people willing to share a photo of themselves (either alone or with family, friends, pets, other BCO members, etc.), allow us to use your first name, say where you are from (it can be from anywhere in the world!), and give us a quote on how important BCO is to you. We are looking to have at least 40 people and have (only) a few weeks to work on this.


    If you are interested, could you please email Melissa at mjenkins@breastcancer.org, with your photo, first name, where you live, and your quote? Also, PM us if you have any questions!


    Thank you, thank you, thank you for helping us!!


    Melissa

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Hey, has anyone noticed we are nearing 10,000 posts??? That is a lot of encouraging, informing, laughing and sometimes crying. Love it.


    Nihahi, I'm glad things seem to be settling down some with your son. I, too, hope it's some kind of wake-up call. Also, the Red Cross is lucky you want to join!


    Sbel, no, no, no to new wounds! Prayers for you.


    Lahela, I'm glad you are making progress and hope it continues! That is so cool that you feel your medical people are taking good care of you. Not all of us can say that.


    DebDylan, rock that hat/wig! Good for you! I hope chemo doesn't knock you out this next time but glad you can sleep through the SEs, at least.


    Dvygirl, I had a hysterectomy also and DIEP was fine. My new scar is above my old one.


    I have to get the flu shot in my butt, too, Goldie. I wonder how close to surgery you can get one????

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  • jan-m
    jan-m Member Posts: 88
    edited October 2013


    Thank you Bailey and lahela.. appreciate the welcome :)


    So sorry about the lymphedema Bailey! Yikes about the size of your scars! I am a scarrer as well, I have scar tissue and some type of cording in my armpit down my arm and into my chest. I figure that if all I get out of this surgery (if I get it) is relief from the constant tightness, I will be a happy camper!


    Haha.. oh yeah, I had an ooph (laparscopic) as well. How quickly we forget eh.. Survival!!


    Is this abscess(lahela) and wound (sbelizabeth) both from the DIEP you both had? I wish both speedy recoveries!


    Did you all get CT scans on your abdomens before surgery?


    Thinking I should ask the plastic surgeon to see pictures of his previous work after reading DebDylans post!


    Excited to see the surgeon today!! You all have a good day!!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited October 2013
    Jan-m, my wounds are a result of my Stage II, when my PS moved some things around, removed some fat necrosis, etc. They're not huge, just...there...and one of them has been on a wound vac for almost 2 weeks. It's probably coming off tomorrow--yay!


    I didn't get a CT scan before my DIEP. My PS said he didn't need one. Good luck with your appointment today!
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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    jan-m, welcome to you! I hope that cording gets taken care of.


    Good grief! I just called my pcp's office. The message on the phone while waiting was talking about breast cancer awareness and said "it can be highly curable." What??? I complained to the med. assistant but, of course, she said, "I can't do anything about THAT. She doesn't know if the flu shot can be given in the butt. Waiting for her to call me back...sometimes I feel like I am the only one in the whole wide world with bilateral lymphedema and med. professionals don't know what to do with me.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Jan-m - all my issues sound scarier than they are (at least I think so!)...no worries.


    That cording sounds like AWS...axillary web syndrome...have you been treated for it at all? A well-trained, experienced lymphedema therapist should be able to give you some relief from that. Not necessarily something your have to live with!

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  • lahela
    lahela Member Posts: 515
    edited October 2013


    Jan-m - my abscess is from the surgery - the PS said it was probably caused by some fat necrosis but because it was behind the flap it had nowhere to go so my body was trying to deal with it the only way it knew how. Not a common occurrence, I gather. And there is no sign of infection in the flap itself, so hopefully it will be okay soon.


    I had an abdominal CT before surgery to locate the blood vessels. Just found out the other day that during the CT they also spotted cysts on my other ovary (we knew about the whopper on one of them). An added bonus, I guess!


    {{{{{Jeannie}}}}} so sorry you have to face this ongoing LE saga after everything else.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Hugs, Jeannie....you are not the only one. This is my biggest pet peeve about the whole fandango....the aftercare....it is my soapbox....and I wish more pink money went to funding programs and education for living life AFTER surviving bc. Yes...I get that if there was a cure then aftercare would not be an issue, but until then there are thousands of us walking around with life long effects of living through it.

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Jeannie, before I had my bmx I was offered a flu shot at my pre-op. So, I thnk they would prefer you be protected. But, to be safe I would ask.


    Also, there are some years I walk out after my flu shot and forget I ever had it, and then there are years were I feel like I have a mild case of the flu for a day, or two. Who knows?!

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    busy day on the thread again!!! Yes, jeannie....I've been watching the number of posts creep (or fly, depending on the topic) towards the 10,000 mark. I think that is pretty incredible, given the relatively short lifespan of this thread. Not only does it reveal that we are indeed a "chatty" group, but I think it also reflects our commitment to help and connect to as many ladies as possible. We all should take great pride in what this thread has become, and also, I think we all have a true sense of gratitude towards everyone who posts.


    janm...welcome! Are you able to have your surgery somewhere close to home, or are you travelling?


    Debdylan....you sound good....get that "attitude" rockin with the hat/wig thing....sounds like you HAVE found your look!


    I didn't have any CT to search for vessels either. My PS believes the most important info on their status can only be determined during surgery....so he doesn't bother. I ended up as a TRAM, hasn't made a lick of difference in my recovery, my flap or my tummy.


    yep....the "mis-information" and "missed opportunities to give meaningful support" associated with pinktober cannot be over soon enough for me!!!!!


    geez.....you guys in the states are way ahead of us in Canada re: flu shots. Not even being talked about here yet, except one news story that explained you will be getting a shot to protect against 3 strains of flu this year, and that we canucks are only getting 2. ....hmpf.....not sure if it's financial or political reasons for it.


    Have good days ladies....off for a walk!

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    oops...forgot to add. Mods....I will be happy to respond to your request. I'll pm later today to get details....I hope others on the thread join in too.

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  • LuvSnow
    LuvSnow Member Posts: 229
    edited March 2014


    Hi ladies,


    Met with the PS at Johns Hopkins today. I really liked her and her assistant. Unfortunately she said she would not recommend any (TUG of SGAP) procedure for me. She said I was too thin (I don't believe that lol). She was honest in saying that she felt she would not be doing me a service if she performed one on me. She suggested a different type of implant, smaller size, and fat grafting. And yes, she can make me a nipple ;)


    I cried...there in her office. I felt like an idiot. I am just so disappointed.


    I guess I really have no choices. :(


    Thank you all for all the information...you've been so kind.

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  • sweetpickle
    sweetpickle Member Posts: 749
    edited October 2013


    Well ladies, I have spent the better part of tnis afternoon boohooing as I still dont have a referral to a lymphedema person. I have put on another five pounds since Friday which makex about eleven pounds in the past two weeks. I have been actively trying to lose weight with diet and exercise so thix is unreal. It freaking hurts like heck too at night when my swelling is the worst. I appear to have been dropped by PS. His nurse told me yesterdzy that she was waiting to hear back from the clinic. I call them agsin today and another nurse told me that PS says go see your primary care docotr and have him send PS the report. WTF?


    In tears I call MO and speak to his nurse who says she will get me in with the clinic. I dont want to go back to PS ever again but I still need stage two done. I am a medicaid patient so who the heck will take me? I am so depressed over this and I refuse to eat anymore solid food! I hate this process and how crappy some people treat us.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    mom, I'm sorry about your news. I hope you get something you feel good about!


    Sweetpickle, go to the National Lymphedema Network, put in your zip code or state and see if there is a therapist near you. Hopefully somebody takes Medicaid. Seeing your PCP sounds like a good idea, too. You have suffered enough! Vegetables can be very filling....

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    jan I had a ct scan because my PS said she wanted to make sure my previous c sections didn't limit my blood vessel supply. She said that from there it looked like my vessels are through muscle so I may have to transfer a small section.

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  • liefie
    liefie Member Posts: 2,440
    edited October 2013


    Sweetpickle, so sorry that you are having such a bad time, and that help is not forthcoming - so not cool! I cannot believe this PS. You are one long-suffering individual, and I take my hat off to you. Hopefully that onc's nurse will move her backside, and get you an appointment. To put on 11 lbs in 2 weeks is not normal at all, and it must be fluid retention. It needs to be relieved, and you will probably need a diuretic to get rid of the excess fluid. It can't continue like this. Have you considered going to the ER? To me it is beginning to sound as if your condition warrants it, really. There they will have to listen to you, and take some action. Big hugs to you!

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    I am also glad to know who Wilbur is! Lol I thought I missed an important part of the story

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    sweetpickle I can only IMAGINE your frustration! I was going to suggest the ER as well. You shouldn't have to deal with being ignored and pushed to the side.

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  • sweetpickle
    sweetpickle Member Posts: 749
    edited October 2013


    I honestly have thought about it, but I feel a bit silly since its just water retension. I feel like those guys need to be helping the heart attack and accident folks. I plan to have dh call them tomorrow as he is a paramedic and speaks the lingo better than I do. He was beyond pissed when I called him this afternoon and told him how they were treating me.

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  • sweetpickle
    sweetpickle Member Posts: 749
    edited October 2013


    Jan- They did an ultrasound on me prior to diep.


    Jeannie- Thanks, I will check them out.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Sweetpickle, you don't know if the reason you are retaining water is serious or not. ER might be a fast way to find out. I hate that you are struggling so much.

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    you def shouldn't feel bad.. They prioritize emergencies and although you may have a little longer wait Id def rather read they sent you home with an appt

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  • krissy42
    krissy42 Member Posts: 40
    edited October 2013


    Vision changes after surgery? I have had two episodes of eye issues, where my pupils feel like they were dialating, I could barely see up close with my glasses on...like i need readers (which i don't need). Both times seem to correlate with me taking my pain meds. Any one experience this?

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  • butterfleyez
    butterfleyez Member Posts: 116
    edited October 2013


    In preparation for surgery in 7 days!! I'm wondering about renting a lifting recliner. Anyone use these? Is it overkill?

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  • Dyvgrl
    Dyvgrl Member Posts: 471
    edited October 2013


    Lymphedema is nothing to mess with. It isn't just fluid retention, it actually damages tissue. Go to the ER!


    Renting a lift chair - I totally would! I found one on craigslist myself tho for $100 so it works for me!

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  • Zenful
    Zenful Member Posts: 599
    edited October 2013


    I have not posted on this thread, but actively read your comments, and you are an entertaining and informative group! I almost feel like I know you all. I know a few of you from the NOLA thread.


    Momof5 - please don't give up, thinking you have no choices. I thought my only choice was a latissimus dorsi flap with implants until I found the NOLA surgeons. I was close to tears, too, because it knew the suggested procedure was not something I could live with. I did not have enough fat in any one area for a fat flap surgery, but the NOLA docs were able to stack fat from my stomach and my butt (even though I never really had a butt).


    I am just 2 1/2 weeks out from my surgery and doing really well. In fact, I just scheduled my Stage 2 surgery. Hoping they can make my butt look as good as my boobs in Stage 2!

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    butterflye, my power recliner couch was very helpful. You still have some time to do some squats to make it easier to get up from a sitting position, if you don't get the lift chair.


    Zenful, so glad you're doing well! Thanks for sharing that with us.


    Krissy42, sorry, but I didn't have any vision problems. Maybe you should try a different pain med.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Sweet....I am getting worried about you, too, water retention can be a sign of something serious....any other symptoms?


    As far as if it is LE, where to get a referral, Carolinas Rehabilitation has a lymphedema program. Idk if they take Medicaid, but you can get to forms on their website to fill out if you have Medicaid....So it seems like a logical step to think that they do. Websites can't be trusted, though, so call. 704-355-3558. I imagine you need the magic "prior authorization" though? I don't know the system well. I am just getting ticked off for you and want to go all legal on somebody's rumpus. Grrrr.


    Krista42 yes! Narcotics can make your pupils dilate! It's one of the things we are taught to look for if we suspect someone is working under the influence! I think we should call it having Wilbur in your eyes.


    I didn't need a lift but loved my recliner...several ladies here had lift chairs. I loved my shower chair! Not necessary, necessarily.....but nice.


    Zenful...welcome ...love the name :) So happy you are doing so well!

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