TE TROUBLE
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Wow! What I would do without the ladies on this board, I do not know!!! You are all so wonderful. It's been 5 days since my TE removal and I feel like a brand new person. More alert , but still tired and dragging of course. Then again that might be because I stopped taking the effexor after experiencing suicidal ideation more than once.
I do not know what the infection is yet, I will find out on Wednesday when I see the PS and get my stitches out. I still do not know how I caught the infection. I had no radiation. MY BS does speculate that I had a rapid heart rate and shortness of breath for a while and that could have been the infection growing and the body fighting. The PS said we can do the exchange in 2 months. Although the TE is out, he thinks that the muscle was expanded enough to accommodate the implants.
Anyone here have the final exchange 2 months out? Also, I do worry if my body will reject the implants. Sigh......
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Special K:
OMG!! I am sorry for your revision. But I am pretending it will be 'fun' to recover together! How will the sx be for you? General anaesthesia? How long? Can you come home the same day? Will this be the last one? Fingers crossed.Are you going to get on the March 2014 surgeries thread? I want to stay in touch. Or maybe we could PM each other... I so hope to get to Tampa for a get-together, if I could have a few weeks in a row without a surgery
Is there an Eileen Fisher there? I need to go flat shopping.XXXXX
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Dear School Counselor: I do not know the answer to your advance questions. I just wanted to let you know that infections suck! I had two of them. Sending you hugs.
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SpecialK, please come over to the March 2014 Surgeries thread. We could use your expertise. (Lord knows you've had enough of it!)
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When is the FL get together? Where? I'll be driving home for a visit in May. (St. Petersburg)
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Sandra - here is the link for the Tampa BCO ladies group. We usually get together at least every other month and the header has the event info:
http://community.breastcancer.org/forum/34/topic/791258?page=43#idx_1267
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bobo - we will recover together! I usually have propofol, but this surgery is at a hospital here in Tampa that I have not had surgery in (I'm trying to hit them all, lol!) so I guess it depends on what they use, but I do very well on it, and don't have any nausea. Because they are installing new dermal matrix I can't have this procedure done in a surgery center, it has to be an inpatient facility. I will come home same day - the only time I have stayed overnight is for BMX with TE. On the Eileen Fischer question, I know Nordstrom has a section, but I am not sure if there is a stand-alone store.
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I am sick of loosing this thread from my favorites! So sorry SC. And Bobo sorry for you too. I had infections they never knew why. They actually lost my culture for my 2nd one. So they had to put me on a general broad spectrum abx. I am allergic to a lot of abx so it's always a hard thing to do. My P'S seemed to take it as a challenge to get ms to the final exchange. ( although he was as happy as I was to get there! LOL) he worked with the I'D doc's, took extra precautions AZ and told me that it wasn't my fault. (Probably because he knew it came from the hospital - a nosocomial infection) but I appreciated the thought. I have cats at home and my DH changed the litter and everything just in case. I sat with a sheet over me whenever I sat so they didn't step on me with the little litter littered feet! (Say that 3 x fast...) LOL He was a bit arrogant at first but by my exchange he was a bit more humble and as nice as I could have wished. Even when he went in to stitch up the lymph vessel that was leaking over 100 cc a day after the exchange he didn't give up. The only thing he never did was leave in the TE with an infection. Once I ran a fever out it came. It may have been why I healed better.
Hugs to everyone who's struggling and still healing. Man I took this path cause I thought it would be easier. HAHAHAHAHAHAHA!!!!!!! LOL Live and learn.
Much love.
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Sitting here wondering what PS will do today. Have had wound vac strapped to me 24/7 for a month. Still sucking out nasty fluid, although nurses says wounds are getting smaller. Kind of hoping it gets removed today because I'm up around $800 out of pocket so far for the machine rental. But then I will go back to packing the wounds so will need 7 day nursing again....on goes the battle.
BTW - no cultures ever came back positive for me, but I still lost both te's.
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Denise-I'm so sorry you are still going thru this!! Are you seeing the PS today? I know how hard this stuff can be, day in and day out of dealing with it. ((hugs))0 -
So sorry Denise. I just left my PSand they could not figure out what the infection was either. There was no growth.., ah well.
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I hope they can take them off denise. But at least they really make a difference.
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It's amazing how so many of us don't know what the infection is/or was. My MO thinks its just skin thats so broken down from radiation that easily gets an infection with no definite source even by just stretching I wonder?????
Babs
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Vac is off. Now back to daily wet to dry packing by the visiting nurses. Back to PS in 2 weeks. Chemo #11 tomorrow. Thanks everybody for your encouragement!
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Denise
That's great that the vac is off
Babs
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Put me in the pseudomonas group. BUT....the first culture did not culture anything. Then, when we continued to treat and it didn't go away, he cultured again. Told them to culture it for ten days. It literally took that long to show up.
AND...a nurse told me I should call the hospital to speak with their infectious disease person and tell them I had this, since in all likelihood it happened during the BMX. Apparently the docs are supposed to report any type of infection like that after surgery, but they don't always do it. Probably figure it is a reflection on them. I didn't ask mine if he did. I just called. Turned out the woman was an acquaintance from my neighborhood. She took it very seriously and literally followed up before and after every surgery.
When I went in to either have the expanders removed or implants put in, depending on the severity of infection he found,, I smuggled in a can of clorox wipes and told them all to use it and if they had any sniffle or illness to get out of the room. Got a huge laugh and the doc told my husband to tell me he left one of the wipes in. I like to keep those people happy!
On the doctor side, I interviewed four oncologists and two breast surgeons as I wanted to make sure I was comfortable with the treatments they suggested, etc. For each doctor, I had a long list of questions that I faxed them the night before so they could be prepared and I wouldn't waste their time. (worked moderately well. only about 50% had either received or looked at it). I had planned to interview three PS. When I sat down with this one, I had faxed four pages of questions. He took an hour, sat down, went through every question one by one, giving me all the answers and telling me what he could or couldn't do (I really wanted the foobs out of all body fat). When we left, my husband said he liked the guy. Then, I found out he took my questions and dictated answers one by one and sent them to my PCP, who was really impressed. That was it. I cancelled the other two appointments. I love this guy and he was as frustrated as me over the whole infection thing.
I think if you aren't comfortable, then you need to articulately tell him why you are annoyed and want to switch, and ask him how you can resolve this so you don't have to switch. For me, I had to be part of a team and the decisionmaking process. I can't just go with every suggestion they make until I have a complete buy in. I challenge my poor ONC at every turn, but we are good friends now and he understands that is how I work.
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Hello, longtime lurker, first time poster.
My PS is on vacation till Wednesday so I am hoping someone here has had this happen to them. I have expanders in both breasts and on the right breast, on the side closest to the center of my chest, I can actually press down on the expander and leave a dent. With a light touch I can move the dent around. The breast is not squishy. I just noticed this a 2 days ago...my first fill was one week ago. Overall it doesn't seem like I am losing any volume in the expander and on the other side closer to my arm pit it is still very firm. Anyone have this? I'm driving myself crazy wondering if it's a leak or defect.
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rhondasana - I have had TEs in for almost 3 months now...I'm not an expert but my first thought is that they are just weird like that probably especially with only one fill. Maybe someone else can say whether there is a problem, but I think likely it is just not very inflated yet and has a strange shape for now. Mine are/have been odd in many ways in terms of how they feel/look/are shaped and have changed a lot with each fill.....
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Thanks TrinityMorning! I'm hoping it's just not inflated yet. It's reassuring to know yours have also changed after fills!
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Hi all,
I just wanted to share my TE failure and success with all of you who may have had infections or adrenal issues. I just had my exchange to implants and I'm very happy. It was a long road to success, but I am very glad I chose TEs.
It all started with a failed BMX/flap surgery in 2011 that left me on a wound vac for 4 wounds for 5 months. Afterwards, I decided to work toward tissue expanders and implants in order to avoid a flap surgery (and failure) again.
My first TE surgery resulted in losing my left TE due to a MRSA infection two months later. I kept the right TE without incident for about a year while I waited to try again on the left side. I had no real problems with the right TE--no pain, infections, or other problems.
My second TE surgery on the left side was in October 2013. From the beginning, it was trouble city. I was unable to work. The drain would not stop draining, I had recurrent high fevers, ER visits, hospitalizations, heart palpitations, exhaustion, and breathing trouble plagued me. The ID doc said it was pseudomonas (a super tough sticky bacteria that doesn't respond well to antibiotics) based on my milky drain culture and pumped me full of antibiotics. I remember that all the docs had this look on their face when they talked about pseudomonas, explaining that I had one of the worst resistent bacteria. I developed severe achilles tendonitis due to the antibiotic Levaquin but the fevers had not stopped and I needed the only antibiotic that worked on the bug (according to the culture) to complete and be successful in getting rid of the infection. I became DESPERATE to save my second left TE. I was petrified that I lived in a world full of bacteria that could cause me to lose my TE. I went through decolonization of my household in order to hopefully increase the chances that I would not get an infection. Multiple infection disease docs, multiple PSs, I was on a hunt to find the source of the fevers and eliminate it so I could be sure to keep the left TE. The recurrent fevers and red breast made me feel like I had an infection and was just waiting for the TE removal when it would get bad enough. By the first week of December I was a mess, with heart palpitations keeping me awake all night long.
I did something desperate. I don't advocate this but it turned out that it MIGHT have been was saved my left TE. I read recent published literature in medical journals about research on drug resistant bacteria and their improved susceptibility to the penetration of antibiotics with nano particle colloidal silver. I read about the safety studies with colloidal silver. I decided to take colloidal silver with the antibiotic to improve my chances of getting rid of the bacteria. I made myself a guinea pig. I did not tell my doctors about it.
I used the colloidal silver for three days (4 teaspoons a day) while I took the antibiotics, the fevers stopped, my red breast became normal, and I got off the antibiotics in December. I had my exchange surgery on 2/14 and everything is fine--my drains were removed a week later. No more palpitations, no trouble breathing, and I am able to exercise.
I share this in case some of you struggle with these very resistant bacteria and reduced immunity. I knew when I took the colloidal silver for three days that I was not clear about the safety of what I was doing and that there was no way my doctors would have been able to recommend it to me since it is not FDA approved. However, I am glad I did so and I theorize that it may have been why my left TE was able to survive the infection.
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Warmsmart,
Go to the head of the class! You have been through more than 10 of us all put together! The fact that you've had a good outcome is so inspirational.
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WSC. You do what you have to! I am glad something worked for you.. i had a lot of trouble as well. I us Norwex body cloths to wash with. They have the silver woven in. You have to be careful not to use any soap or softener.
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Warmsmartcookie - Thanks for sharing your story. Since I just got off my wound vac after one month, I give you kudos for wearing that thing 5 months. Glad it all worked out for you.
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well ladies my back incision didn't stay closed. It opened up again with infection. Packing wound for now. Flaps still look good and TE are in place.
Hope all of you are well.
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aw hell, purple! Cut that out. Hoping and praying for fast healing for you.
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purple87 - Well, hell, that's not good... Praying that infection clears up quickly without causing much damage! Please keep us posted....
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I'm sorry purple, hang in there!!!
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purple - dang! Sorry this is happening!
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Purple ((hugs)) Sorry to hear this!! Hang in there girl!!0 -
Purple, not fair, not fair, not fair!!!
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