Update on my infection and question

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allisontom911
allisontom911 Member Posts: 425
edited June 2014 in Lymphedema

Hi ladies,

I again need to thank you for all of your help 2 weeks ago when I got my cellulitius. When I was released last Friday I of course had my PICC line. Home nurse came on Saturday and showed me the IV meds and so forth. All good but my line was really hard to flush. She came back on Sunday and could not get one line to work and the other was extremly hard. So Monday go back to the hospital and yep line is not working at all. Got a new PICC line and so far that is all good. My left breast (opposite of infection/cancer side) was still 2x larger than the other side. So saw the plastic surgeon on Tuesday and sent me for an ultrasound and there was a ton of fluid around the expander. So Wednesday I got a lovely JP drain put in. GOD I hate these things. Plus there was so much scar tissue they had a hard time getting the tube in. I was yelling in pain, crying on the table and I have a very high tolerance for pain! ...That is it for the update.

Is there a preferred type/brand of sleeve for exercise. I lift weights and do an elliptical with the arm movement. I use the Juno brand now.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2011

    Allison, yikes!Frown I'm so sorry for all the complications! Nothing's simple, is it?

    You don't mean you're doing weights and elliptical now, right? You mean once the drain and PICC are out and the docs give you an all-clear? As I remember (and there's no guarantee that I do, that's for sureUndecided!) you haven't ever seen a lymphedema therapist. If not, that'd be a smart next step. You can get a referral from any member of your team. She'll help you with garment fitting and use, deciding on how to move forward safely with exercise, and she'll keep baseline records of measurements for future reference. Here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Whew! Keep us posted, and be well!
    Binney

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  • allisontom911
    allisontom911 Member Posts: 425
    edited July 2011

    Hi Binney!

    I am doing just lower body weights and elliptical but not the arms. Doctor said I could do just leg weights and light cardio while I have the PICC and drain.

    I have seen a LE therapist. I got a new sleeve and guantlet back in May. Maybe I should give her a call once I get all the tubes out to have her check everything out.

    One question for you thou Binney if you dont mind. I am having the same type of pain in my LE arm that I had 2 days before my infection was bad. Could it just be I am having normal pains or could this be a problem? I am still on IV a/b 1x a day and oral a/b 3x a day.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2011

    Allison,

      With the IV and oral antibiotics, hopefully the arm is not hurting due to cellulitis, but due to all the trauma you've been through. You should let your doctors know, though.

    As for brand of compression garment, I think you meant "Juzo" and the key is just that it fits well. Each of us has our preferences, and some were created by fitters who only work with a couple of brands. I use Juzo and like it. I also use Medi.

    What an ordeal. I would think with a PICC and a JP drain in, of course you're in pain. 

    Hope things get better soon.

    Kira

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  • jan12355
    jan12355 Member Posts: 5
    edited July 2011

    RUN, do not walk, to a knowledgeable lymphedema therapist ASAP (one who only works with lymphedema patients).  You need a specially fitted sleeve and glove and need to be taught lymphatic massage, bandaging at night, exercises (exercising is very good up to a point--too much can be harmful), limitations in use of your arm, etc.  I have had lymphedema for almost six years, have had cellulitis a couple of times, and I get fitted for a new sleeve/glove every six months or so.  My therapist is wonderful, and I could not function without all she has done for me.  Also, my oncologist prescribes antibiotics for me (for cellulitis) that I always have on hand and take with me whenever I am gone overnight.  They have saved me a trip to the ER a couple of times--it has been my experience that cellulitis can develop seemingly in a matter of minutes. 

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  • allisontom911
    allisontom911 Member Posts: 425
    edited July 2011

    Thanks guys...Jan I do have really good Le therapist. That is all she does. She showed me MLD but I forget what to do. I have hand outs but scared I am going to press to hard. I will ring her tomorrow and she when she would want to see me.

    I can tell you I never ever want to have a JP drain put in again with just lidocaine. It appears I have bad scar tissue so they couldnt get the normal tube in. Took them over an hour and 2 incisions. I will insit on light sedation to dope me up. I was yelling on the table and crying. I dont cry from pain, ever. Even after my mastecomy and lat flap. That was horrible pain.

    Anyways. Thanks again. It is so nice to have you all here. Wish I had visited here sooner!!

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011

    (((((Allison))))) - Geez!  I hope you continue feeling better and the drain gets rid of the fluid.  My goodness!  Take care!

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  • hymil
    hymil Member Posts: 826
    edited August 2011

    Allison that's not bad scar tissue, that's very good scar tissue, doing a fantastic job of keeping your innards in and everything else out, medical impedimenta included. You must have a real strong resistance to pain, having those drains put back in with only lidocaine. Sorry you are going through all this and praying you feel better soon.

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