37 days & still draining...
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Chelee
Member Posts: 513
I had my so called simple mastectomy on March 15th and I *still* have my drain in. Its will be 37 days tomorrow. I am fed up with this. It has to be 30 cc's or lower...and I am still between 54 & 60 cc's per day. I called my surgeons office yesterday & he said he wants to leave it in. (I KNEW that.) I just wanted to know how much longer this MIGHT go on! It doesn't seem normal to me after everyone I've talked to about it.
Has anyone else went *this long*? Remember...this was just a *simple* mastectomy *without* a SNB. If I had a SNB I might not question this as much...but this is getting old real fast! (I posted this on the Her2 board...I really want to know how *normal* this is.)
Chelee
Has anyone else went *this long*? Remember...this was just a *simple* mastectomy *without* a SNB. If I had a SNB I might not question this as much...but this is getting old real fast! (I posted this on the Her2 board...I really want to know how *normal* this is.)
Chelee
Comments
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Hi Chelee,
I had a bilat simple mast WITH a SNB Monday and I am down to 40cc/day (2 days post surgery). So - there goes the SNB theory. I guess everyone's surgery can be different.
I have *very tight* compression (Recon) and maybe that is why I am not draining much. In fact, the side that did not have the SNB has only drained 22cc in 2 days. Did you have recon? How long were you "aced" up?
I don't know what normal really is either. Sorry about your frustration.
-Anne -
I had my drains in from my diep flap for 5 weeks and I was going crazy. I finally went on bedrest for about 3 days and the drainage slowed down enough that I could pull them out. Maybe you are being too active? Or, are you taking Advil or fish oil supplements or other medications that thin your blood?
Laurie -
Anne, I wasn't aced up last year with my MRM...nor was I this time. Was I suppose to be? My surgeon never mentioned that to me. Maybe thats why its taking so long? Do all the women that have mastectomys get aced? I'm glad you brought this up...I plan on asking him about this. (Your right Anne, so much for my SNB theory.) lol It must be nice to have a bilat and be that close to your drains being pulled. Lucky you!
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Laurie, As far as being to active..I have really been behaving myself on purpose. I have taken things really easy. Done very little. Thats why I am shocked this is going on so LONGGGG! As you mentioned about meds that thin blood...I went off my baby asprin long before my mastectomy and have never started back up. The only thing I have taken is advil a couple times...and that is about it. No supplements of any kind. I just know I am a pretty patient person..but this is getting darned right ridiculous. I want this out so I can get a new bra that prothesis so I can go OUT in public again without a darned jacket on. I have a bit of a tummy so I have to have something up top rather I want to or not.
Thank you BOTH for your replies. At least this gives me an idea that this is NOT normal. I am really curious about the ace bandage you mentioned?
Chelee -
I guess my mother is in the same boat....it has been 24 days since the surgery and she is still draining around 50cc every day. It has been like this for her for more than a week...
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Joyluck, Just remember...I already contacted the Genis book of world records and I now hold the title for having my JP drain in the longest amount of time. So tell your Mom to just forget it...I win. lol
But seriously...your Mom sounds like me...I just keep holding between 52 cc's to about 58 cc's. It doesn't go above that or below it. Ugh. Tell you mom to hang in there...it sure gets old having these drains hanging out rubbing on you. Very annoying! I was fed up with mine after the first 3 days...let alone 37 days. Thanks for your reply. At least I know I am not the only one taking forever.
Chelee -
Ok, you win! but my mom sure has a lot of potential and you never know...
I wonder if your doctor is planning any treatment to help with the healing? My mom mentioned that, if her condition doesnt change in the next few days, her doc might want to replace the tube with some thinner ones and/or give her a shot at the area that still drains. The shot contains something supposedly fights colon cancer, while as a SIDE EFFECT, it also helps attach tissues together...This sound all very suspicious to me....Have you ever heard anything like that? -
Joyluck, I do agree that your Mom still have a good chance at winning this. As they say...its not over till the fat lady sings. lol
My surgeon hasn't mentioned a darned thing to help my healing. But I am sure interested in this deal your moms surgeon is talking about? I have never heard of anything like that to close up the space with the seroma? If it works I would love to know about that. I am going to ask about this. I have to admit it sounds strange...but if it works...that would be great. I've had a big seroma in the orignal side for a year now and I'm tired of it. Now this other side just keeps draining too. I want both sides healed up once and for all. I don't care how they do it.
Let me know more about this if you get any info on it? I know soon I am asking for a 2nd opinion to go else where to a new breast surgeon and see what can be done about this? Hopefully your Mom will heal up soon because its sure frustrating and un-comfortable to have a drain in.
I finally dropped down to 48cc's today. So if I am lucky...another week. Ugh.
Chelee -
I know the drains are annoying, but we get so many stories about people whose drains come out early and then they have all these other problems with fluid and it turns into a months-long saga with wound care....
Just hold on! -
Rose, That is SO TRUE. I totally agree with my surgeon leaving it in until it gets down to 30cc's or less. As you mentioned..I've seen too many problems from removing them early. Heck, last yr when I was 1st DX & had my MRM I had that drain in almost a full month. It did get UNDER the 30cc's and yet I STILL have a big seroma in that side. So if I can have problems even when I LEAVE it in long enough..I certainly don't want to remove it to soon...then I know I would have major problems.
But it sure gets old. I think what got me this time is since it was a so called *simple* mastectomy verses a MRM and SNB like last year...I *thought* it would be done draining so MUCH sooner then last year. But not! I've lived with this seroma in my orignal side for a yr now and its awful. There has to be a way of getting it to heal up? (Mine is very un-comfortable and makes me misrable.) I thought in time the body would take care of it.
Chelee -
It sounds like you're a "drainer"!
I had a simple mastectomy and hardly ever had more than 30cc. It came out pretty fast.
My kids were totally grossed out by it! They were so helpful while I had it in. It was like I was "really" sick or something. Once the drain came out they went back to ignoring my requests for help bringing the groceries in -
Chelee,
I'm sorry you are enduring this ongoing saga with the drains. After my mast & tram recon I had two drains in my pubic area from the tram and two drains at the recon/lymph node site. The ones in the pubic area pulled and tugged until I thought I'd lose my mind. The ones up top were "sewn" into my skin so they didn't come out. They, of course, tugged & pulled. I was truly going crazy. And I only had them for three weeks!!!! I feel for you sister!
Kim -
Mine was only in eight days and I grew to hate it. Here is a pic, looked kind of like a monster, don't you think?
I bound my chest too, when the drainage continued. I used a wide ACE bandage.
Fists up! -
Wow...I really am going to hold the world title with the genis book of world records! Today makes it 40 days! I thought it was getting down there some but today it went back up to 51 cc's. Its NEVER going to quit at this rate.
Mary Anne, did you decide to ACE yourself up...or did your surgeon do that? I've heard that mentioned before but my surgeon has never mentioned putting a ace on me? What did you do...take your drain home for a souvenir. lol I think I will ask for mine when it comes out.(Or should I say, IF it ever comes out.) haha Only eight days...your so lucky! Must be nice.
Chelee -
Rose, being a real drainer at this point is a true understatment. lol I really don't understand WHY this side was a much LESS invasive surgery and its draining so much longer? That is amazing that you barely had the 30cc's. I had to laugh about your kids. I BET they did think it was gross. hahaha I bet they were really going out of their way to help their poor Mom. It must of looked awful to them. But so much for the sympathy after it was removed. lol (Sounds like you have some very normal, and intelligent kids.) Now its back to doing all the work yourself. (That sure didn't last long did it.) hahaha Aren't kids great!
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Kim, Sounds like you had to suffer long enough. Maybe not as long as mine...but 3 weeks I would say you had more then your share. But you did have alot of work done at once so actually you did really well.
Like you...I have the one drain stitched in to my skin so it won't fall out. Everyone once in a while I will catch the tubing thats hanging out and it gets a little yank and it hurts. I am surprised it hasn't gotten ripped out yet.
I just want this out so I can get a new bra and prothesis so I can go out and look some what normal again. I've been without anything since March 15th. My last visit to my GYN last week it was HOT outside and I HAD to wear my jacket to cover me up with this drain hanging there and nothing up above. (I was cooking!) I look awful. I am sure glad I don't have all the drains you had in or I would REALLY be going nuts! I don't know HOW you did that. Four drains at once. Your tough. I think I will just have to give it up and make mine a fashion accessory and put some little dazzlers on it and dress it up some how since its going to be a permanent part of my body. lol
Chelee -
The picture above was still attached to me! I looked at it, after taking pain meds and thought it looked like a monster so snapped the picture.
My surgeon recommended the ACE when I developed a seroma after having the drain removed. The seroma happened within two days, it was drained once, I ACED it and that was the end of it. Before the drain was removed I had a compression bandage on.
I am sure this will be done soon and like everything else it will be just another bad memory.LOL.
Fists up! -
I had my last drain in for 20 days and I could not hit 30. It stayed at 50 never moved. The nurse called today and told me to come in it was in to long and needed to come out. So to save a trip I pulled it out myself. Really nice to get it out and to move with out a pull. I now have a concerned about if the fluid build up so asked if I should wrap it tight or wear something tight and was told no not a good idea. So an other example of all doctors are different and all the confusion is just to darn stressful.
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Bit of update from my Mother. Her doctor has replaced the inside tube with a thinner one. The drainage actually went up to 70cc for the first day with more bloody content, possibly from the new irritation, and is slowly coming down. It was around 40 cc yesterday.
Chelee, we still dont have winner yet! -
MaryAnne, Wow, I had no idea that was still attached to you. I was told my drain was a J.P drain and it looks nothing like that? Right underneath where my breast USE to be there is a BIG bunch of gauze covering the incision in my upper stomach? That tubing runs up into the mastectomy site towards my axilla. I was worried about the tubing coming out in time but my surgeon explained to me there is a good *foot* or more in there...plus it is sewned to my skin of course. But at first I was going in weekly to have him check it and chance all the gauze and bandages on it.
After seeing yours I wonder if I have that big round thing inside of my body? It doesn't feel like it when I press down were the tubing runs out to my drain? I must say yours looks so much nicer and safer as to keep out infections. It is covered so nicely. I wonder if most women have one like you did? You should see the mess I have sewn into me. I wonder if thats not why mine continues to drain forever?!
I am still going to ask about putting a ACE on this. As someone else mentioned...all surgeons/doctors are different. But I would THINK that would HAVE to help it heal up quicker by pulling the tissue inside together so that these seromas CAN'T build up. I am so glad you showed me your JP drain...that really is interesting. Yours is so slick and fancy compared to mine. Mine looks like it was installed behind a dumpster in a dark alley compared to yours. lmao Thanks Mary Anne.
Chelee -
joyluck, Wow, your Mom gets her new thinner one put in and it goes up to 70 cc's for a day. And here I sit and I was FINALLY getting down to the low 50's. Now I am where your Mom was that one day. I am GOING BACK UP!! ARGH. I was in the 50's, now the last two days I am up to 76 cc's. It looks like a clear yellow fluid most the time...but I did notice a couple times it would get deep red and disappear. It only happened a couple times...but makes me wonder whats going on in there?
So as far as having a winner...I have this BAD FEELING its going to be ME. lol This is day 42 for me & climbing. As I mentioned...my fluid is going UP not down. It should not be draining this long in my opinion. It was ONLY a simple mastectomy with NO SNB. I can't wear a bra, or go out without a jacket and its getting HOT here. I timed my surgey so I could be done and have some freedom from all this.
Keep me updated joyluck...but I really think I WIN. lol Unless your Moms goes nuts on her too and starts going back up like mine. (Gee...I hope not.) I never thought this was possible...so I will keep my fingers crossed that your Moms will continue to keep going down
Chelee -
Chelee,
My drain looked nothing like MaryAnn's, either. Here is what most JP drains look like.
Good luck getting rid of that thing. I had mine a long time, but you do have me beat!
Miss S -
Miss S, Thanks for posting that picture. That's what mine looks like except that the end of the tubing goes through a small incision right *underneath* where my breast were verses through the scar line. But I have the exact same blub and tubing. So this is the norm I guess. (I still must admit that Mary Annes looks pretty fancy.)
Miss S, Did you tubing go thur your scar line? Or some place else? Just curious?
Thanks again for posting this Miss S...I really appreciate it.
Chelee -
My tubes (2) were in my side and stuck up into the wound on the inside.
MaryAnne did have one swank drain. She must have had a fancy pants doctor.
You're very welcome, Chelee. I didn't want you to go around thinking your doc had picked up your JP drains at a flea market. LOL
Best Wishes,
Miss S -
Miss S, So your surgeon stuck yours in the side. All of them must have their own preference as to where they drain the best. But I am glad to know my surgeon didn't find mine at a FLEA MARKET. Thats a relief. I was LOL when I read that. hahaha
Chelee -
Joyluck, If your still out there I just wanted to know IF your Mom got her drain out yet? If she did...I am the OFFICIAL WINNER!!! TA DA!! It will be 48 DAYS tomorrow!
I HAVE to call my surgeon...the drainage is NOT going down anymore. It was getting down to 44 cc's and the worse was in the 50's. But NOW 2 days ago I had 108cc's. I am running from the high 50's to over 100cc's now. Plus I notice some days it will be clear yellow color...then other days its the *light red*...which is how it looked right after surgery. I WANT this drain out...its driving me crazy. I am calling Genis book of world records...because I just KNOW I HOLD THE RECORD. Its not the one I wanted to hold...but its better then nothing I suppose. hahaha
Chelee -
Margerie, I know my surgeon told me to wait till it gets under 30cc's. But I have to agree with you this is going on a tab bit too long. I was just wondering today IF they have even thought about me STILL sitting here stuck at home with this drain in?
I WAS on antibiotics. In fact I filled 3 bottles of them. But I RAN out about a week & 1/2 ago. So I have been without for a while, that's why I am getting a bit more concerned. All I need is a good infection. I will call my surgeons office tomorrow & ask what he WANTS to do about this? If he tells me to continue to WAIT this out I won't be very happy. (I am suppose to be getting a 2nd appt at the City of Hope this coming week for an entirly different reason, but if this drain is still in I will certainly get their take on this!)
I haven't had a REAL, and *complete* shower since March 15th & I am fed up with that one thing alone. I am tired of washing just body parts and NOT the front of me! Can you smell me all the way over there yet? lol
Chelee -
Chelee, I saw you posted and thought "I hope she got that darned (edit here) drain out!" Yuck- yuck. My sympathies!
Have you been on antibiotics this whole time? That can't be fun either. I am sticking to my original diagnosis- he needs to go back in there and clean up the non-healing tissue/look for oozing vessels. 7 weeks is just so wrong.
Can you get a second opinion? I know you don't want to pull a drain that still is collecting that much fluid- but when is it going to end? -
It does sound like you're not healing correctly.... that is a long time! Prayers are with you!
Miss S -
Quote:
Right underneath where my breast USE to be there is a BIG bunch of gauze covering the incision in my upper stomach? That tubing runs up into the mastectomy site towards my axilla. I was worried about the tubing coming out in time but my surgeon explained to me there is a good *foot* or more in there...plus it is sewned to my skin of course. Chelee quote
So THAT is what I am feeling all "coiled up" under MY arm. Like a huge alien in there. I am in week three with my little "friend" JP. I certainly empathize with you. And I will pray that you can get "delivered" soon from that thing. I know how badly I want to be rid of it! -
BeckGal, Yes, it sure sounds like that is exactly what your feeling in there! I had no idea they put that much tubing in there. Yuck. If your at 3 weeks I bet it won't be much longer and you will get yours out. I think I still hold the world record for having a JP drain in the longest. Its 52 days today and I still don't know when its coming out? But SOON I will ask to see ANOTHER surgeon to see WHY this is STILL draining like it is? I ONLY had a SIMPLE mastectomy and NO SNB. So there is no excuse for this? Seems something has to be wrong. I've heard of many women going as long as you...3 wks up to even 4 weeks. But I am going to be hitting 3 months in a few days. Ugh. I SO WANT A REAL SHOWER. And my normal comfortable clothes...I am TIRED of trying to hide this darn drain.
Hope yours comes out SOON. Its so annoying to have these in. Three weeks in your case is LONG enough...so I am sure you can relate to how misrable they can make you. Let me know when you get it pulled out. I bet its soon. How much are you draining at present? Are you getting close to 30 cc's yet?
Hang in there!
Chelee -
Oh, Chelee..you will ALL hear the SHOUT OF JOY all the way from Houston TX when it comes out. I have dropped from 115CC a week ago Friday to 45 as of yesterday. This mornings was 20, so I will see what the story is tomorrow morning total. It drops about 10 every 2-3 days. I go Tuesday and I am BELIEVING that it will be below 30 so it can come OUT. The "alien" MUST go. LOL
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