TE TROUBLE
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Copy of my remark on the October surgery group (I hate to do that, but I'm tired.):
Update on the new bent TE! Yesterday my PS gave me a fill of 110 cc to relieve it! I was surprised he dared to add that much to the 210 cc from surgery -- less than 5 days later -- and it made me feel quite tight and uncomfortable even though as a total it's still 90 cc behind what I had in the infected TE he removed (and he said he didn't remove skin at the incision like I thought he might need to do). The IV antibiotics I'm giving myself (Vancomycin and Cefepime) are working well already. No more pink areas or cellulitis. Blood cultures had no growth and the wound culture had a few gram-positive rod diphtheroids. I don't know the significance or how they think I got those. I saw the infectious disease specialist today and he made no changes to the antibiotics and seems happy with my progress. I have more than a week of those IVs left.
I feel really tired since the surgery, but not in pain, except when I touch where the TE has a dent at the inside edge, which is still there after the fill.
Olga, I hope it goes well for you. I'd be mad about a leak too. But how do these TEs get infected so easily? Swapping for a replacement was not as awful as I thought it would be -- probably simple as an exchange, not as a big deal as the BMX.
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Mom of three-sending positive wishes your way!
Mt-Liked your comment. After complaining about my setback, the office manager said "At least it is a reconstruction setback and not a cancer one." I looked at her and said thanks for putting it in that context. You are so right.
Ann-From what I have read, it is a whole combo of things. In my case, pseudomonas, it is not unusual to have them peacefully minding their own business in your body, and your immune system can deal with it. However, when a foreign body (implant) is put in, the pseudos see it as a threat and attack it. That combined with the fact I was still on chemo, even though my counts were ok, my system was likely compromised and couldn't fight it off. I was on both the antibiotics you were on. It helped a lot. After I had mine removed, I ran a fever in the summer (likely a bug). Everyone freaked out and slapped me back on iv antibiotics, along with oral ones to make sure they covered all the bases. LOL. I was better in 24 hours, but still had two weeks of antibiotics to take. It is also easy to get an infection from the people that are handling us in the hospital. My close friend, a nurse practitioner, says that pseudomona infections are often surgery related.
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Yay, DLL66!
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Good night, ladies. Hopefully sleep will come easy tonight. Watching "Rudolph" with my 8 year old, nothing better! XOXOXO
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Olga - I'm the other person that had her TE leak. Mine folded over at the site of the port and was punctured by my PS during a fill. He said he had never seen one do that, but as you can see from this site...it happens. I don't really think it is anyones fault. I had mine replaced September 26 and will have my exchange surgery December 23. I could have it a couple of weeks earlier but my husband needs to work. I have one more fill scheduled for Dec. 8, but may skip it.
My best wishes to those having exchange surgery this week!!
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momof3: Sending you good thoughts! You'll do great. Let us know how it goes!
I too had a meltdown last week about my TE situation. I am more scared than I was before BMX. I guess I know what can go wrong now. I know too much! So my mind gets worried.
I put up my Xmas tree today but am thoroughly exhausted. Had wanted to have "everything" done before surgery Thursday, no way in hell that will happen. I have to let it go.
Why in the world did I schedule surgery in December? Honestly, I could have waited another month. I have waited so long already. But in October when we set this ball in motion, I really, really wanted the TE put back in well before Xmas so I could enjoy the holiday. Not realizing I would have a dominate T-Rex arm and would need to do "everything" early! OK, that is my rant for the night.
Sleep well ladies. Keep Momof3 and me in your thoughts the next two days! ;-)
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momof3 and ren - good luck on the surgeries! Sending positivity to you! Ren - reading that you may regret scheduling surgery in December made me laugh - I got married on Dec. 10th (1983 - yikes!) and our anniversary always gets missed! It is a Christmas party, out-of-town travel by me, shopping, decorating, you name it! Whenever someone mentions thinking of getting married around the holidays I always say don't do it! However, I am hoping for perfection for you and no regrets!
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Thanks FluffqueenO --TE expander or anyother type staph infection that leads to Sepsis is for us cancer patients an 80% death rate. Having had it last May I know now what the signs are and get myself to the hospital fast. I was pre-septic this time but actually spent more time in the hospital 5 days vs. 4 last time.
I am home now as of last night and on oral antibiotics. There is so much randomness and variation that it's in God's hands for this infection to be gone for good or if it comes back then I'll go to surgery and get it taken care of.
Frankly I'm glad I took the risk by getting TEs and didn't even know the 40% failure rate at the time. It wouldn't have mattered as I too would have put myself in the 60% success rate group.
Infections are worse than the cancer and treatments. I'm sick and tired of being sick and tired. Everything is temporary though so if I'm unhappy today, it's just today, things are always different tomorrow.
I wish all of you ladies who are getting TE's fixed, treated for infection, or removed nothing but good blessings and wishes for quick recovery.
Hugs,
Kat
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kat - glad you are home and hanging in!
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Thank you SpecialK.
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Thank you , ladies for the good words.. I am felling better now...Howevwer, it will be operation number 4 on my poor left breast( 2 lumpectomies and BMX back to back, started on July 26), sometimes I am thinking, that this breast cannot stand it anymore and reacting with all kind of strange things , like redness and leaking...
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olgah - I know what you mean, how much can it stand? If it makes you feel any better my left side (prophy side, not cancer side) has had 5 surgeries since last November and is now doing well. My TE was replaced after being out for 7-8 months, is now receiving fills, and looking fine. I am on my way to exchange (hopefully!) probably sometime in February.
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Kat, you said it SO well. This is all Temporary. May we ALL keep that in mind (emphasis for my sake not anyone else's) when the crappy days come.
Thinking of Mom this morning....and Renn, I hope you get some sleep tonight and that tomorrow goes extremely well!
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SpecialK , you such a wonderful help in a forum ,thanks and wish you luck! Are you going to be on Tamoxifen too?Are you on Herceptin now? I noticed, that first week after chemo ( I am getting TCH)
Iam very depressed and cry a lot . Is it SE?
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I'm home and hurting but able to move around. Eating some crackers now so I can devour some pain meds. Valium helps so so much. Everything looked good, she broke up some scar tissue and right TE is in place. Glad to have use of my left side. I have 2 drains. Was home by 12:30. Threw up in bushes outside of hospital lol. Felt much better after that. You're on my mind, Renn.
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olgah - thank you for saying that - you are very sweet! I am still receiving Herceptin, until February. I have not noticed any depression/tearfulness, but I haven't struggled too much with that. I am taking Femara, an aromatase inhibitor, instead of Tamoxifen because I am post-menopausal. I think the whole ordeal of surgery, TE problems and chemo is enough to make you cry! When will you be done with chemo?
momof3 - Glad you are home and all went well - except for the throwing up in the bushes!
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Momof3-hope the time in the bushes was the only time! I hate anestesia, that is why I am wondering if I really need the fat grafting or not. Right now they look pretty good to me, tons better then my tiny little double breastfed A cups ever looked.
Renn-best of luck to you tomorrow.
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I have a leak too! I went totally flat during the Thanksgiving break. I am ready for my exchange sugery next Thursday, December 8th. So, when I went to the PS yesterday, they put in 250 cc and it sure did hurt. They are having me come back on Tuesday the 6th for another huge fill. He told me that there is a chance he will not be able to put the implant in. So we wait for the surgery and see what happens. My PS thinks my port folded over too
and therefore a leak was made. He has only seen this happen 2 other times and he is in his 50's. So I guess it is not that common. I will be so glad when all this is over. I have my first grandson coming late December, so I want to be up and moving good! I wish the best for everyone! We can do it, yes we can!0 -
It looks like I'll be getting my TE expander replaced on January 6th. My situation is a little different than most here in that I had an implant fail. My PS said he is going to try to fill as much as he can during surgery, but that there is no way he'll be able to expand it all the way. I have a 475cc silicone implant on the left. How are the expansions the 2nd time around? Are they easier? Did everyone have drains when their TE was replaced? My PS didn't mention a drain, but reading some of the recent posts makes me wonder. I HATE drains. I just had another one when the implant was removed. It just about sent me over the edge
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I'm out of the hospital and on Augmentum but my PS called today and said we weren't out of the woods and the infection could rear it's ugly head at any time. He wants to keep me on Antibiotics until the exchange on Dec.22 --- if we make it that far. I believe in success!!
What works for me is to take everything "one day at a time". I had a good day today and felt better than I have in weeks, so I'm grateful and I will thank God before I go to bed.
My PS confirmed today that they never put an implant in when infection is present and they're removing a TE. He said drains are pretty standard. He also said he'd get me onto IV antibiotics a few days before the 22nd, if we make it that far...I will. I have faith.
I lost 6 pounds in the Hospital and ate like a horse. Go figure.
Best wishes and hugs to all of you suffering under uncertainty -- One day a time!!!
Hugs,
Kat
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I cannot believe the difference in the TE replacement this time around. Yes, I'm in some pretty harsh pain, but NOTHING compared to the pain I felt when they were placed the first time around. I can get up and down without screaming in agony, and can take a deep breath without hurting too bad. Couldn't do those things when they were put in the first time. I don't think I was completely healed from the BMX 6 months ago. It was well worth the 6 month wait to try this again. I'm sitting here waiting for my pain meds to kick in, but I really do feel remarkably better than before. I still will take it one day at a time, as we have all learned that anything can happen, but today I'm pretty confident and happy. I go back for post op visit on Monday. Let's hope it's a good weekend. NOBODY is to walk into our house without first scrubbing hands down!
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Momog3- glad you are doing well. I felt so much better with the second ones also.
Sundermon-fills felt pretty much the same to me. I just felt better in general.
Olgah- keep the faith. I had two surgical biopsies also, followed by the mastectomy/reconstruction, and then te's out....te's in.....te's exchanged. Still have some things left to do. We get through it.0 -
momof3: YAY! Happy to hear things went well. Not happy about your visit with the vomit bush though! I am talking to my anesthesiologist in the AM to make sure they give me whatever they gave me last time, which worked like a charm. I am thrilled to hear you are not in as much pain as BMX. People tell me that, but it's good to hear from the trenches. But you have TWO drains? Oh my. I was prepared to have only one. Guess I'd better let go of *that* expectation! Eat plenty of protein to help with your healing. I am about t hit the hay and take my final sip of water. Surgery is at 9:30 AM PST manana.
Sundermom, I added you to our surgery roll call at the top of this page.
MTnester and SpecialK: Thanks for the shout out!
Babycakes, Olgah, Ann, Kat and all the ladies here with te trouble... hang in there. That's about all we can do. ;-)
I'll post when I get home tomnorrow. PS may keep me overnight...not sure yet.
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Renn-good luck tom. Will be sending wonderful dreams your way for your little nap.
((HUGS))
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In quite a bit of pain this morning, to be expected as everything has worn off. I was up quite a bit yesterday too. PS said to keep moving, lots of fluids....to avoid extra fluid buildup. Slept great but was up a few times to tag team the pain meds. Just got the kids off to school and am exhausted. I don't realize just how much I do in the mornings just to get them off to school. Did a little laundry, cleaned up after the little tornados, and now it's back to lala land and my recliner for a little nap. So glad that I went nuts a couple weeks ago and made some meals to freeze so I don't have to worry about cooking. Thinking of you, Renn!
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Saw my PS this morning, and he was going to do a fill on this replaced TE (formerly bent before Monday's fill). I refused a fill because I'm still uncomfortable from the one 3 days ago (described in note to sundermom, below) and it's just too much almost 8 days post-op now.
Question about my other TE -- the one never infected on prophylactic side. It seems to be migrating upward toward my port, definitely higher than the other TE. I have read this can happen. Is there any way to stop it or get it to return downward (maybe by occasional pressure downward)? It is also hard and more tender on the upper part, so I had my PS check it this morning, and got no particular advice but he did say that he doubted it could be moved by outward pressure because blood vessels begin to cling to it. I am wondering if the hardness is a capsular contracture, although I didn't say those words. Have any of you experienced this -- migrating TE and/or contracture? It's frustrating to have this going on, having just replaced the other TE. (If it had been more evident before surgery, I wonder if he could have adjusted this one at the same surgery.)
sundermom - The first fill on my replacement TE last Monday was uncomfortable as any fill afterwards, but I had a larger 110 cc fill to get the bend out of the middle since it was filled only 210 cc at replacement surgery. The infected TE my PS removed had been filled to 410 cc, so I still have 90 cc to go to break even, and more fills beyond that are expected--only what he can get done in December, though, because I have to start rads in early January. I do have a drain again, putting out 22 cc on day 7 post-op, so I hope it reduces enough to remove it by next week. PS likes under 20 cc for 3 days in a row before removing it. (I never got there on my final drain in the infected TE, even at 6 weeks, a bad sign, and ended up in surgery the next week, night before Thanksgiving.)
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Good luck, Rennasus!
Glad to hear you are up & about, momof3infla!
Ann, I had contracture with an implant. My PS put me on Singulair to prevent a recurrence.
So...I am about to have another huge setback in my recon. My radiated skin is just not holding up even though I have lat flaps. I can currently see my implant through a small hole that has opened up & it looks like my PS will be removing my implant in an office surgery tomorrow. My skin is visibly thinning in another spot as well. I am getting ready to run away now...
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Oh no dll
Those recovering I hope all is going OK.
I have a PS and and BS appointment tomorrow. It is the first time since I have seen the BS since 2 weeks post op.
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dll66 - oh no!!! I am so sorry!!! Did you discuss this possibility previously and what could be done?
chick - I was just thinkig that it has been a year since my BMX. I have only had the post-op check and then a 6 month check with the BS. I wonder if I am supposed to see him at the one year point? Last time I saw him I only had one TE, so he might be happy to see the other one in and looking quite large! I had a fill today, I am officially at max capacity on the right - more will be overfill. I think I am going to do a fill next week, be out of town until 12/20, then depending on whether my PS office will be open, one or two more than I am done and in the wait to exchange.
kat, momof3 and ren - how are you all doing?
annalive - I have no advice on the migrating or CC of the TE but I know I have seen others on the boards with that problem. I found that moving around made more volume for the drain - the quieter I was the less was produced. So, lie down for the rest of the time! That is not possible, is it? Probably not.
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No, I saw my PS on Mon & things were relatively okay. By Wed a hole had opened up. It was all quite unexpected. I will most likely be without one implant for a couple of months while my rads side heals. Then we'll try again...
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