Help !!! I have been hospitalized with cellulitis !!

hopepedigo
hopepedigo Member Posts: 23
edited August 2014 in Lymphedema

I am 39 years old, almost 4 years out , I had the right mastectomy, 30 lympnodes taken out of my right side .I didn't start getting lympadema till a year and a half out from radiation and chemo, I ve went to MLD'S ,have a pump,have spent major money on compression sleeves,night sleeves, jovi-pak combi sleeve, and pit-paks ( to break down fibrosis areas).Its still swells up off n on , my upper arm is huge.Over the last year and a half I have been admitted to the hospital for cellulitis 3 times ( every 6 months ughhh) I m in the hospital for a week or more on intravenous high dose antibiotics , it hits me so fast I usually wake up in pain with a hot red arm and within a few hours ,or on the way to the hospital , I m losing consciousness, I stopped breathing last time,I go into convulsions,black out  !! Pretty much near death!! I don't know what else to do to prevent this , I wash my hands all day constantly ( I work with children), disinfect all day ,keep wounds bandaged and cleaned and covered, pretty much everything I can do but somehow this keeps happening!! I am so frustrated and depressed, I feel I am doing all I can and it is doing nothing??? any help or advise would be great ! Dr.'s don't have a lot of advise ,except get on antibiotics every time I get a cut,, hang nail  or open skin( that would be a lot ).( they don't realy know what to do )It is getting more severe everytime. The last incident two weeks ago , I woke up ,red arm , hurting , pain ,as I walked to the restroom and changed my clothes, It accelerated and within an hour I was shaking uncontrollably, couldn't talk and started losing consciousness.Its getting scary .Especially since I am single, fairly young ( atleast by mind lol) and I am my only source of income ,so I have to keep pushing and working on.   Help !!!!   Any body going through this ?? I feel so alone and confused

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Comments

  • coraleliz
    coraleliz Member Posts: 1,523
    edited August 2014

    I've never had cellulitus. On thought comes to mind. Are your blood counts normal? Radiation, chemo & tamoxifen(if you are on it) can all cause "low" WBCs. I'm 3+ years out from diagnosis. I had RADs & take tamoxifen, my WBCs are low. My MO blames the RADs. 

    Sorry to hear about your hospitalization. It sounds like that's where you need to be right now. Sending you healing thoughts. I'll give you "fairly young" because I'm 55.

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014

    I had chemo, and radiation 3 years ago ,but not currently  and I ( against all dr's consent ) am not on tamoxifen .My blood counts have been good , except once the infection hit , because of their fighting I got a bit low in the hospital , but they bounced back up .I would have never thought after getting through the cancer ,chemo ,radiation and surgery that this would be my worst enemy ,lymphedema and recurring cellulitis.I am a super clean freak and constantly staying on everything with my skin and wounds or cuts ect.. .I am at a loss , and have been searching out anything that can help .

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    I did have 30 nodes removed , which always seemed like a lot to me ,I haven't realy run across anyone so far that has has 30 or even close to that removed ? I don't know if that is a factor , but I did last 3 years out  before this started

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  • kareenie
    kareenie Member Posts: 339
    edited August 2014

    Hope, www.steup-speakout.org, a website started by some ladies from this board, has a nice article on cellulitis and another on medical emergencies. Doctors are woefully ignorant of lymphedema and its complications. 

    Another random thought, have they identified the organism responsible for your cellulitis infections?  Have you seen an infectious disease specialist? 

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  • doxie
    doxie Member Posts: 1,455
    edited August 2014

    I too would be very distressed by this.  Has it been discussed that you stay on a low dose of antibiotics year round?   I've heard of this, though maybe it wasn't for cellulitis.  I know some women carry antibiotics with them to take proactively.  This seems a serious enough problem for that.

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  • kareenie
    kareenie Member Posts: 339
    edited August 2014

    PS I hope when this hits you are calling 911 and not trying to get yourself to hospital !!

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  • annika12
    annika12 Member Posts: 433
    edited August 2014

    how scary :( I also had 30 lymph nodes removed but no issues......yet !! Don't know much about it but sure seam to be a good suggestion to speak to a infections specialist !!! And 911 as soon as you feel anything , hang in there hugs!!!

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  • kareenie
    kareenie Member Posts: 339
    edited August 2014

    Hope I bumped (brought to front page) an old cellulitis thread. There are several others. If you have the time to read through old posts, click the menu button then search and enter cellulitis in the search box and choose to search lymphedema forum.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited August 2014

    Had 16 nodes out but no nasty LE cellulitis beast yet. I know drinking tons water is great for thinning down the thick LE protein rich fluid we gather. I wonder if drinking more water regularly may help keep the beast away. Just guessing here.

    Keep on the boards as some girls here have fabulous ideas and knowledge and great  emotional support is felt here.

    Calling an ambulance would give you care right away. Keep us posted.

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    yah the dr.s and hospital staff  act like they don't know anything about the issue ,even though I ve been to the same hospital 3 times for the same thing!

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    @Kareenie, one time they got a good culture from my blood stream and it was strep, which at that time, unknowingly, I had been around a child that had strep , the last two times they have not been able to get a good culture , as the antibiotics got in ,in time and  were holding it back from my system and they said the best culture would be directly from the arm , but they of course can't do that .Every time I go in I see the infectious disease specialist and depending on if they get a good culture or not ,and find out what it is they address with antibiotics accordingly, but then other times they haven't been able to pin-point the issue , either way they put me on vancomycin and levaquin intravenously for a week , than take home antibiotics ( two sets usually ) to take for another month, which the bad thing is if at some point from taking vacomycin so much ,my body doesn't respond to it ( they ve told me this can happen ) There is only one other higher antibiotic that would work, so I m afraid if I work my way up higher and higher through the antibiotic chain so to speak at some point the way I m going nothing will work ??

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    Annika , how long ago did you have your lympnodes removed?

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014

    I have learned to call 911 right away because of the scares its given me, I actualy drink water all day and I eat very healthy , and exercise daily

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    hope, 

    So sorry you are dealing with another f in nightmare.....excuse my bad potty mouth, but I curse like a sailor these days....

    I only had 7 nodes removed. My surgeon was very open that he did not want to take many, he did not want to ruin my life with lymphdema issues. Always wondered if it was enough, 6 were bursting with lobular cancer. But, I need to trust my Drs. & he is my favorite. 

    Wish I had some great advice, just wanted to let you know that I am thinking of you, & hope this is the LAST time you have to go thru this...

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    awesome thanks kareenie I ll check it out

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    doxie they have talked about me getting on antibiotics as soon as I get a cut or something in my arm or hand ,but I am a little scared the lower dose antibiotics won't work and again worried that at some point because of taking such high doses of major antibiotics that my body will become unresponsive to them

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014


    thanks  HoleinoIne  , It's been hell!!  I am the owner of a childcare facility, and have been doing this for 15 years , I ve kept it going through all the cancer , chemo, radiation, tests, ect... but the lymphedema is whats holding me back now and with cellulitis recurrences and hospitalizations, my daily life ,and trying to bounce back and get energy  after infections has become an uphill battle . 

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  • annika12
    annika12 Member Posts: 433
    edited August 2014

    I had surgery early DEC 2013 !!!! So not a year yet

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2014

    Hope, do you have a regular infectious disease doctor, and have you seen him/her to strategize when you're not in the hospital fighting an immediate infection? If so, and s/he has not suggested going on a long-term low-dose antibiotic, then for goodness sake ask why not, or go get a second opinion. It's time to take decisive action and not wait for another infection to jar you out of your routine. 

    It can be difficult to find an ID doctor who's familiar with lymphedema/cellulitis, so do have a frank discussion about her/his experience and see if there's any willingness to learn more about it in order to come up with a prompt solution. 

    You need your life back! For goodness sake seek out expert help, ask plenty of questions, and don't settle for "wait-and-see". That time is well past.

    Please do keep us posted.

    Hugs, prayers,
    Binney

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014

    I don't have a regular infectious disease dr,but I am able for the first time to do a follow up visit ( if insurance permits ughhh) with the one I saw in the hospital ( who seemed pretty knowledgeable) So hopefully I ll get some help there

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2014

    Hope, if your insurance objects request a case manager--something they provide to patients with complex or chronic conditions that require constant management. Maybe the word "request" is too mellow--INSIST is probably better. Case managers can cut through the red tape and get things ordered and approved in a timely manner. 

    Go for it!

    Hugs,
    Binney

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014

    Has anyone out there had frequent recurring cellulitis? With a quick onset ?

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited August 2014

    Hope, I just wanted to say you're in my prayers. My LE therapist told me that the more nodes taken out the higher the risk of infection goes up. I had two nodes out and have mild truncal LE. She tells me that risk of infection is very low for me, but I worry the most about infections because when I take antibiotics I get C Diff! The ID docs say that when I have to take an antibiotic then I have to take oral Vancomycin too and then take it ten days after I finish an antibiotic to try to prevent C Diff. I'm also allergic to a lot of antibiotics.  I am meticulous about keeping wounds clean too but some are just more prone to infection, unfortunately! I too am more worried about infection than I am about cancer coming back or mets at this point. It's crazy but infections are scary and so are antibiotics. It's a double edged sword.  I'm so sorry you're having so much trouble. Hang in there and keep us posted. XOXO!!

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  • hopepedigo
    hopepedigo Member Posts: 23
    edited August 2014

    Thanks Luvmydobies , yah its very scary , lets pray someone comes up with some more info and help for us soon !! Science has progressed so far , hopefully it'll progress our way !!

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