TE TROUBLE
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IslandGirl50 - My first fill hurt also, I definitely felt the needle going in and was quite surprised. The next fill the following week, the valve had shifted slightly because the expander was more full. Needle did not hurt, nor did it hurt the week after that on the opposite TE. The 2nd fill I bled like a stuck pig, through the band-aid and all over the gown. Same deal - had to apply pressure, etc. Don't know what was up either. I am done with chemo, didn't have fills on chemo because I lost the left TE so had to wait to have it put back.
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I bleed too, although not that much. But enough that it is noticable. This fill yesterday hurt a little more then the first. Like when I was getting filled for the first time.
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Look at all these Tampa girls on here! We were down in Bradenton today at Lakewood Ranch for my 14 year old's baseball doubleheaders. He plays for the Tampa Venom and we are ALL over the Tampa area even though we live in Palm Harbor. Would love to meet you ladies someday.
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Special K - my surgeon is the medical director of Moffitt Cancer Center in Tampa (but I had BMX over here in Clearwater). He's also the med director of Morton Plant. Small world!
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IslandGirl--Did they numb the site before they stuck the needle in? They always numb me but I can't feel the numbing needle when they stick that in, so don't know if I would feel the needle that goes into the TE. I have had bleeding afterwards but not to the extent you talk about. Sorry it was so painful for you.
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momof3 - We Florida girls dominate troubled TE land - we have Tampa, Palm Harbor, Cape Coral and Bradenton represented. I think we need some kind of meeting to discuss this!
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Cool... I can vouch for TE trouble in the Tampa bay area. Let me know when the meeting is 0
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miasanta - how is it going? I was just wondering about you! I am serious about this meeting!
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I'm in for the meeting - lol. I can't tell you how much this group means to me. It's like a load was lifted off my shoulders, and I can ask and tell you everything about my TE problems without being embarassed. You girls rock! By the way, what is up with our Buc's 0
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Jealous of the little Florida click going on.....
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LOL. chickadee, you should come on down here! We'll take you to the beach...
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Thank you for your prompt answers! Made me feel better to know I am not the only one this has happened to. I have read a lot on this thread and you guys rock! So sorry we all have to be here but at least we have each other.
Have a good week everybody!
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Ladies, what is up with so much TE trouble in Florida? It's kind of weird, no? I wish I lived closer! You guys should def. meet!
I have yet to have a fill, but I had no idea you could bleed from the needle stick... I've never heard anyone mention bleeding after a fill before.
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ren - yes, what is up with FL - I think the humidity is causing it. We should have a party and all the TE challenged should fly in for it!
I had no idea about the bleeding either! I was pretty surprised. As I said I got the fill, PS put on a band-aid I had put my gown back across my chest and was still sitting there talking to him and he sayd "uh-oh" and starts fumbling around for more gloves and guaze in the cabinet - I looked down and there was blood all over the gown. A few minutes of pressure did the trick and that same side did not bleed the following week. Who knows? Another of the mysteries of the TE!
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It is wierd that there are so many of us right here in the Tampa bay area. But cool too! Lets get together!
I spent way too much time on BCO reading threads about DIEP and Lat surgeries...pretty overwhelmed. I guess I'm not ready to cross that bridge yet but I started reading and just kept going. Have to say though there are so many women who have been through so much. Breast Cancer Sucks!!!
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We actually looked into heading your way at the end of October all you Tampa peeps. We looked at Captiva Island. We opted for Jamaica instead this time around, but who knows...maybe someday...when we all have our rockin new set of boobs...and no more TE troubles.....
Of subject, but my dryer...still not fixed. Guy came today (sunday, thought that was nice of him) and it looks like during the storm that soaked my son's shoes that broke the dryer in the first place we might have had a power surge/lightning strike. The control panel is fried. Just my luck.
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Hi everyone! I read all the new posts almost every day, just hasn't been feeling very talkative...I'm doing well. My flat chest is kind of Frankensteinish with all the scars and then the flap on my right. And of course the scar on my back from the lati flap. But it's starting to look better and better. I do need to practice reaching my arms over my head -with all the recon problems and surgeries this summer my range of motion sucks! I saw the PS on Friday (2 wks post-op) and he released me to go back to work, light duty. It's been 3 months! In another 2 weeks I'll be able to go back to regular duty (I'm a server at Cracker Barrel). I'm happy with my decision to have both TEs removed, but pretty sure I will want to try again at some point...
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Miasanta: I hear you. At first I said "forget it, I'm done" but now already I am researching my next options...Still, I know I want to wait awhile. Tomorrow I see my oncologist, 1 year follow up. Lots of questions. I think I need PT, my range of motion and wierd pain on one side is really bad.
Chick: check w/your insurance company, and also local electric company on that. My mom had a similar thing and the electric company paid some of the damages....
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IslandGirl-I think the stick on the fill hurts more than anything else so far, particularly on one side. The PS said it is because it is going through the muscle. I told him I had EMLA cream for my port that I used during chemo and he said to try it and see. It helps a lot. I hardly feel it now.
TE's still doing fine and no rash return to date. I will get another fill this week, and it will either be my last or second to last. Implant exchange will be late October or first week of November. I am so paranoid something will go wrong between now and then.
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fluffqueen-paranoid is now my new middle name. I look at them in the mirror and I swear they are the same size, but they can't be, so now I am paranoid the other one is leaking.
Re dryer: Thought about contacting insurance but DH reminded me we have a $1000 deductable, darn it. We actually used the insurance to replace our well pump about a year ago. That was lightning too. Fried the pump, control panel, and melted a section of pipe ($5000).
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fluffqueen - Great idea!!!! I have some of that for my port sticks. Thanks!
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chicadee-We installed a new sump pump several years ago. Not more than a week later, it quit working during a storm. Company came out and told us it "appeared" to have been hit by lightning, which made it an Act of God, and so the warranty wasn't effective. I threw a massive fit, but basically got me nowhere. So...I told them if I had to replace it, it certainly would not be with their company and they could pack up their tools and leave. So frustrating. I hope you dryer issue gets resolved.
Paranoid (or maybe it is hypochondria?LOL) is my middle name on everything now. I have a lower back ache that I am trying to convince myself is due to the herceptin and/or tamoxifen. I also have a really sore spot on my left calf that I am also trying to convince myself is not a blood clot from the tamoxifen. Fortunately, one of my best friends is a very patient nurse practitioner who listens to all my worries, checks them out and tells me which ones to tell my oncologist about. When first diagnosed, I apparently had every symptom of panic disorder (my normal bp went high, my heart felt like it was beating out of my chest, I was losing weight and couldn't eat) and she immediately put me on an anti-anxiety drug to get things calmed down.
So, after all that, I stand in front of the mirror every day and check the foobs from all angles to make sure they are ok! I had figured out a way to sleep on my stomache, but now that I have read all the leaking posts, I am not doing that any more in case I cause them to burst!
Gosh, I sound pitiful!
It really isn't that bad.
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So OK - all the Tampa area girls need to get together for a physical therapy session. I have to say that going to PT over at Moffitt was one of the best things I did. It is a combination of gentle stretching (I would be happy to explain the exercises to anyone who needs them) and LE massage. It has made a world of defference in my range of motion in both arms/shoulders, the right which has mild LE, and the left from all the TE surgeries.
chick - Florida is the lightning capital and I remember when my son was a freshman at Florida State he had to bring a warranteed surge protector for his computer. We have almost everything in the house plugged into those because they warranty against damage if you send in the little card. They sell them lots of places but I got mine at Staples I think. Just a thought.
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Mia - I know what you mean - for the longest time I referred to my boobette as my zombie boob...
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Islandgirl-I'm surprised you have that much feeling after your BMX, that's a good thing. Personally I've have only felt the stick a couple of times and only a quick little pinch at best. Never had an issue with the bleeding though.
Okay ladies, so I took the weekend off and tried to calm myself from the visit I had with my PS on Friday. Again the red spot under the Lt TE is small with less of a raw feeling, but PS again found fluid he wanted to drain (don't really understand why since I've had fluid in the past and he did seem freaked). Anyway he keeps going on and on about how there has to be something wrong or an infection even though I've had no fever, WBC are normal, the area doesn's feel warm and the culture from earlier last week showed no growth. He sent the fluid he drained (about 15cc) off for another culture. I swear to God it's like he is gunning to take the TE for no reason other than he doens't know why I'm producing fluid. I'll be damn if he's going to take this sucker out and start over again with only 2 weeks to exchange surgery, not unless there is clear evidence of an infection, which there is not. I'm beginning to get afraid that he is going to hold the exchange surgery over my head and hold off on it simply because he doens't know why I'm producing fluid or why there is a red area. Also pissing me off that he acts like it should be no big deal to me if they have to remove the TE. Like why would I be upset about that, what a dumbass. Listen my PS is brilliant with his surgical skills and his finished product is amazing, but I'm going increasingly pissed off at him. Have to go back again tomorrow to see what culture says and again there is fluid that has accumulated in the same area. I had fluid removed 3 times last week. I'm ready to lose my mind. Feel like I'm in a race against time to get to the surgery date before he finds something to really worry about.
Any thoughts anyone?
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Survivor, I hear you. I was so worried about that rash that I had under the left TE (and the whole fluid/culture thing). I also felt like I was going NUTS with panic. My OB prescribes Xanax for times that I get overwhelmed with worry, and I use it. I have recently been taking one before my PS appts because I never know what will happen. I am also finding that that red area comes back every time I get a fill. Maybe when the skin stretches so far it irritates the area? I don't know, but I've been to the dermatologist three times about it, have been on anti viral meds, antibiotics, corticosteroid cream, etc... After a couple days of the fill it calms right back down. Maybe it was shingles and just takes a long time to get back to normal. Who knows? Hang in there. Remember, you're the boss:)
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Just a quick question - do any of you jog with the TE's in? I walk and bike, but am just dying to get back into jogging.
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momof3 - Just started back to walking after being wrecked by chemo. I had pain and swelling in my node arm so they would not let me really exercise until I get LE sleeves, which will hopefully be this week. I am walking on a treadmill in the AC at a gym so I am not overheating. Not sure I will ever be able to run outside unless it is cold because I have to wear the sleeves and I'll die of heatstroke - not happy about that.
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specialK-We have everything in the house that is expensive, except the main appliances on a surge protector. The repair guy yesterday suggested we get a whole house protector since it is kind of hard to put those stupid heavy duty 3 prong plugs on surge protectors.
I have a little red area on one of my breast feeding stretch marks that I keep pointing out to the PS and he keeps telling me not to worry, that it is just the fills irritating the stretch mark.
survivor-any chance you could tell the PS that some of the girls here have been told by their PS that the fluid is just the bodies way of filling in the gaps and that it has gone away on it's own?
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chickadee-I did just that last Friday and he said and I quote "your friends on the internet don't seem to understand that I know what I'm doing". This was about the time I got shitty, shitty, shitty with him and told him that I realized that he thought he was a God, and that he was in the OR but that there is othre knowledgeable information out there that I'm considering.
momof3-Had appt with PS today and again no culture growth from last fluid removal on Fri. He had to admit that there is no infection. Actually I think this had alot to do with his attitude last week, he thinks he's God and it hurt to admit he was wrong. Look at the TE for 10 sec and said well there isn't anymore fluid, which is a lie there is, but no more so than has always been there in the past. Didn't have alot to say to him cause I'm still pissed. If it wasn't for his amazing skills I would move on. All I said to him was "are we still on for Oct 3rd", he saide yes as long as everything stay the same.
I will be sooooooooooooo glad to be done with this shit.
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