TE TROUBLE
Comments
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Also, I guess maybe I pushed myself too hard Friday. So I am going to have to really take it easy. Still, there are some things that I have to do. I will just try to do more things with my left arm. My TE hurt me like crazy today, so apparently laying in bed for lengthy periods of time is not good for it either. Temperamental TE. Does anyone ever come to peace with their TE? LOL
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dunes - Come to peace with our TEs??? I don't think so. I think it's more like tolerate through gritted teeth. Sorry you're having a horrible go of it. Unfortunately it's something we all have to go through. Some have a worse time of it others not as bad. Have you tried meditation breathing techniques? That really helped me when I was going through some hard times. I wasn't someone who believed in it but I tried it after my BMX and it worked! I've been there on those sleepless and painful nights. Through my darkest points of this, I could not believe it would ever get better. But the it does. Hang in there.
Michelle
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May 8th I had my TE expander removed on my left side and my "Gummi Bear" implant put in. I am so happy with it and looks and feels great. At the same time I had a TRAM flap surgery to reconstruct the removal of my right TE. I was not prepared for the feeling of how this surgery moves muscles, when I woke up. It was quite a big surgery but I have to say that my plastic surgeon is quite an artist. My breast navigator was able to observe the surgery and was amazed by his perfection. After the inital pain and thoughts of "what was I thinking" I am very happy now. I am two weeks out tomorrow and able to do so much more. I even have a broken ankle that I am getting around on. I went to my son's soccer game and out to eat....of course then I took a four hour nap yesterday. But I am excited about moving forward and looking for fun! I have lived so long without fun and even took at trip to the Emergency Room Friday night. I had complained of pain in my shoulder blade and it hurt when I took a breath. I had to r/o a pulmonary emboli. Luckily it was just some air sacks in my lungs that had collapsed. Painful-yes but not dangerous. Meanwhile my poor husband and I are once again waiting for hours to see if there is something serious that we once again have to deal with.....ugh! We proceeded to head to our campsite for the day....lounge in our anti-gravity chairs by a fire and eat smores for dinner. We didn't care about anything but just whatever the moment brought us. It was one of the best days I have had in months and my husband and I didn't want to leave. All the craziness of medicine can take over and I refuse to let it anymore. I am working on healing and having fun will definitely make the process better!
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fluff - forgot about the rash, I got that covered too!
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If you are looking for a temporary prosthesis and don't want to pay an arm and a leg, I just ordered from this woman on Etsy -- the prosthesis works really well in a bra, looks pretty good, and they only cost $10 a set. Thought I would pass it on:
www.etsy.com/listing/88468585/prosthetic-breast-forms-c-cup-size
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Great visit with PS this morning. The big reveal was awesome. She said they look great. I'm really happy with the size. Got the right drain out, and the left will come out probably on Wednesday. I'm at about 20cc's/day and she wants 30 or less for 2 days in a row. I'm pretty much there. Just don't want to pull it too early with all the work that was done on that side.
Quick question about insurance. My dear friend Meme, who has been in stage 4 metastatic BC for NINE YEARS (she's amazing) was just told that her insurance company is dropping her. Can they do that??? She said that it was actually the payroll company or department who were the ones who were deciding to drop her because of her medical bill costs. She gets a PET scan every 6 months, and Herceptin every 3rd week. It just doesn't seem humane that they can do that to her. It's like handing her a death sentence. Very upsetting. They are exploring their options, but it's so unreal. Any suggestions I could pass along would be great.
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momof3 - That's horrible about your friend! I saw a thread on here awhile back regarding insurance and the person who started it is purportedly an attorney. I can't for the life of me remember what it was called! Also, I think Coolbreeze may be someone to contact. I believe she posted about some insurance laws. She's been through the ringer and could be a good resource.
Congrats on the big reveal!
Michelle
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I'm just sick about it for her. She's been through so damn much already. She has had 18 surgeries!!! Thanks for the info, I'll search for the info.
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momo, that is terrible! it makes me so angry. i'll do some research .... see if I can come up with anything solid.
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I have a question. I just took my bra off because I was hot and noticed on both sides where the alloderm is it is really dark, almost looks bruised. I am hoping it is just from the bra. Has anyone noticed it darker where they put the alloderm? I am going to keep the bra off and check in awhile to see if it was just irritated. I really don't want issues. New boobs is the only good thing out of all this crap.
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Dune...I'm impressed that you can go to bed at 7:30. I am eating dinner at that time sometimes. I'm never in bed before 11. Glad to know you have your refill. Hope you get some rest tonight.
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momof3 - is your friend in FL? We have a high-risk health insurance pool in FL, and many other states do as well. It is health insurance for people who have a pre-existing condition that might prevent them from obtaining self-paid health insurance. It is usually more expensive than standard health ins., but they usually don't turn you down or cancel you.
Also Genentech (maker of Herceptin) has a program to help offset cost for those unable to get health insurance, or afford their drugs. Here is a link to that program:
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Fluff, believe me 7:30 is unusual! I work 4 pm to 1 am. I was just wiped out that evening, probably from sanding the kitchen walls the day before. I was able to get my prescription refilled, so I should be able to sleep for another month.
momo, I sure hope there are some alternatives for your friend. That really is just lousy.
Dianarose, I only know that did not happen to me . . . yet.
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Special K - yes in the Tampa area.
Quick drain question again. You'd think I'd be an expert on this by now. The drain that's left has some bleeding around where the tube is coming out. I think maybe the stitch that holds it in place came loose. I've never had bleeding around the tubing before. I think I'm going to call over there and have them take a look at it. Taking no chances. I think I also may have overdone it yesterday. Had doc appt, drove for 1st time, cooked a big dinner, took a walk. Had lots of fluid output last night. Definitely toning it down for the next week until drain comes out.
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Stitch is still there - I think I had so much drainage at once it was coming out around the drain site. It's slowed down a lot after resting, so that's what I'm going to do for the remainder of the day. Always worrying:)
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I think I'm losing another TE (my left). My right is projecting larger (explain that) and my left looks like its collapsed - or maybe it leaked from the top. Must admit (here only) I did some lifting on Saturday and some planting. This time I'm the cause of my TE problem. I have an appointment with my PS today
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Meredith, Thank you for the link for the prosthesis. I had an LD flap done with a TE in March, but just lost the TE due to an infection. I also lost 2 implants on the same side, and the forms I made to match my right implant are too big because of the flap. I feel like I've had 4 mastectomies on the left side. I have to wait about 4 months to try another TE, and the challenge now is to match the right implant, and these look like they will work. I'm hoping my skin can handle the expansion. It is weak in one spot, and I hate to think I'll be left with a flap and nothing else. Your post really lifted my spirits! Thank you!
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Good luck, Green Monkey. Thinking about you.
PS nurse said that leaking can occur sometimes at the drain site, especially if I tugged or pulled it. She said as long as the drain is still working and draining the fluid, all is good. Been taking it really easy today and the fluid is back to where it should be. Those weird little things can really throw you.
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Oh no GM!
I'm hoping that's not the case! I seriously doubt you are the problem. I was lifting and doing a whole bunch of crap a month after my BMX and as you know started back with my trainer doing a whole bunch of crazy stuff. And that was three months after my TE replacement. Sh!t just happens with these things.My workout yesterday was hard. Not hard cause I couldn't do it but my body was so achy, my bones and joints were hurting. I was just a walking piece of mass yesterday. I was void of anything human inside. I don't know what was wrong. Maybe depression was taking hold yesterday. But as soon as I was given a 15 pound medicine ball to do ball slams, I morphed into BCAvenger! I was yelling F U...except I was yelling the spelled out version, everytime I slammed that ball to the ground. I don't know if I was yelling at cancer, my TEs, my doctor, life in general but I felt good afterwards. I was more human-like after. I slept very well last night too. I went to be at 9p. I popped two melatonin and went to bed. I still woke up during the night but was able to go back to sleep. I'm refreshed this morning.
jlmg - You have really been through the TE ringer also! Do you have other options besides TE replacement?
Michelle
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momof3 - I learned after many drains to cut a slit in several pieces of gauze and slide the cut part under and over the drain, then tape over the drain and gauze so that it can't move and be tugged. This eliminated too much leakage from where the drain is.
BCAvenger - Wow, you go girl! Now I know I should never make you mad at ME! JK! It does feel good to get in a good workout, helps get the ya-ya's out.
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GM - I hope everything is okay for you!
Momof3 - Take it easy today and I am relying on you to tell me the same next week, okay? And as far as your friend, it turns my stomach the way insurance companies do business -- that is if we even want to call it a business. Keep us posted on your friend, okay?
Michelle - If I ever need a bodyguard I know who to call.
JLMG - I had no idea you'd been through so much.......
Off to work again,
T
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surgery tomorrow morning my expander is flat was leeking and my other boob will be lifted and made smaller
if the implant wont fit she will put one in what can be filled after i hope it will work out i am a little woried
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Good luck tomorrow, Erika. It will all work out.
Special K - that's exactly what I did with the gauze. It seems to have stopped leaking. There was just a bit of dried blood. I bet it got pulled after all my activity yesterday. I'm already down to 5cc's every 6 hours today. So hopefully Wed and Thurs will be my 2 days under 30, and it can be pulled on Friday.
) No rush though. I'd almost rather have it over the long weekend just to be sure a fluid problem doesn't happen. It is what it is...0 -
ugh....... surgery tomorrow for me
(((( hate feeling bitchy but .....I'm bitchy..... 0 -
Greenmonkey....I hope it works for you and for all the others with troubles. I dont know about you all, but it never ocurred to me that any problems I would have would be reconstruction related.
Right now, I have a patch of either dry skin or a rash under my right foob. It was itchy last week, now feels rough. Emailed the ps. He said I could come in and he would check, or monitor it for a bit to see if it gets any worse. I see him on the 12th for areola tattooes.
Does anyone who had neulasta think that could cause itching and a rash in the foob area? With the trial I am in, I am getting leukine for sure, or leukine with the peptide vaccine. It has been a couple weeks, so I would think it would have shown up right away.0 -
GM - Why??? What's going on? What did the dr say? I'm sorry.
Michelle
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Ugh. Green Monkey I am so sorry. I had no idea there could be so many problems with TEs. What are they going to do now?
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GM - PLEASE let us all know as soon as you hear! I will be praying for you...
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cliffnote version... BMX 3/5 - PS aka DICDOC F*CKED UP had to have revision surgery on 4/24. New PS took TE's out and put new TE's in this time positioned correctly. This weekend I noticed a decrease in volumne on the left. This morning it was worse and I knew I was in trouble. So...... we're going in tomorrow, take out left TE and put in new TE. WHAT AR THE ODDS ??? I have no idea why it leaked. I'm trying to ......wow, I don't know what I was going to say. I'm really high. I had a 60 cc fill on right and a 120 on left and the left disappeared (hense the leak)... I'm well, i'm not happy but i'm glad i have a great compassionate doctor. love her......night...... says monkeyme
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GM - sometimes the TE folds over on itself like it has a little wrinkle so that when you receive a fill the needle goes into the fill port and into the wrinkle, which creates a puncture in another part of the TE, and a leak. It happens more often than you think and is just a fluke. I think it is more common when the TE does not have very much saline in it - as it is filled more it naturally smoothes out those wrinkles. Sorry this has happened.
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