5th Case of Cellulitis

Options
Katiejane
Katiejane Member Posts: 789
edited December 2016 in Lymphedema

Hi Ladies,   It's been a while since I have been on the forum but I have run into a wall with  this LE and cellulitis .  I've have been hospitalized w/ cellulitis 5 times, twice since the beginning of March and twice I have been septic.  The other 3 times I caught it fairly early.   Even though I know there are no long term studies available to base a decision on, I'm beginning to think maybe a LNT is going to end up being my only option.  My closet LE Therapist is a 5 hour drive from my home.  I am at a loss!  My PCP wants me to see an Infectious Disease Doc as he doesn't believe the cellulitis can be caused by a tiny break in the skin or even a puncture by a rose thorn!  He seems to think it's more of a systemic issue-I do not agree with him!   I'd love to hear from you all-your opinions and suggestions and anything else you might think of!   Thanks!    Katiejane

· Share on FacebookShare on Twitter
«1

Comments

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited April 2015

    I just wanted to say I'm sorry you're having such a difficult time. Everything I've read about cellulitis says it's causedby breaks in the skin although they may be microscopic. I'm no doctor but I don't think it's systemic. Maybe your doc thinks it's systemic because you've been septic before, but that seems illogical since ANY infection can cause sepsis. Maybe you have just had relapses and not been on antibiotic therapy long enough to completely get rid of your cellulitis. Just throwing that out there since you've had it five times since March. Is it all in the same area each time you get it? So sorry you're having this! That's scary! HUGS!!!

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Luvmydobies,       Thanks for your input.  My 5 episodes of cellulitis have not occurred since March--only 2 of the episodes.  I totally agree with you-it is not systemic and can occur from tiny breaks in the skin.  I've had it occur twice from  dental work as well and now take a prophylactic antibiotic before any dental work which is prescribed by my dentist because my Doc says it's not necessary!  I also have a congenital cardiac issue where it has always been recommended to do an antibiotic before dental work which he won't do either. By the way, the cardiac thing was only discovered before they'd let me have Adriamycin for chemo at age 51!

     

     I have had the recommended does of antibiotics for the recommended amount of time so I'm pretty sure that's not the problem.  Even though we don't agree on cause he treats the infection aggressively and with no hesitation.  He is a good Internal Medicine Doctor but he just doesn't get lymphedema as sadly, so many Doc's don't!   It is always on the same side and same area everytime-I had 24 nodes removed on that side with 3 being positive. I also have chest and back LE.   I just feel like I'm beating my head against the wall!!!  I will be speaking to Dr. Massey who does the LNT tomorrow but I am no where near ready to try surgery.  It's a last resort for me!!

    Your screen name caught my attention immediately-I love my Dobie too!  I had always wanted a Dobe and decided after a cancer diagnosis and treatment it was time to act!  Kind of made me realize there may be no tomorrow!

    Thanks for your feedback!!   katiejane

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited April 2015

    I haven't had any infections/cellulitis issues in my 5+ yrs with LE and I have had a lot of cuts/scraps/punctures in less than close to sterile situtations. (I use peroxide on all.) If I were to have that many cellulitis hospitalizations, I would want to see an Infectious Disease Dr to rule out something systemic going on. Could be a combination of 'things'.

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015


    Kicks,       I will be seeing an infectious disease Doc-all part of the plan before any thoughts of surgery.  I hope it's all that easy!! 

    Thanks!  katiejane

    · Share on FacebookShare on Twitter
  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited April 2015

    Wow Katie, it's scary that dental work caused it. I thought it had to be a break in the skin close to the affected area?? I'm sorry you have so many areas affected by LE. Cancer and treatment is bad enough but then it leaves us with these crappy after effects. It's just not fair! You're right about doctor's not knowing much about LE and it's frustrating!

    Congrats on the dobie!! I have three. Two boys and a girl. I volunteer at at Doberman rescue here in NC so I'm around them all the time. They're the best therapy! They're such goofballs and so entertaining!

    Let us know what Dr. Massey and the ID doc says, and anything else you find out, please. I'll be thinking of you!

    · Share on FacebookShare on Twitter
  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2015

    You may be getting cellulitis thru cut skin while touching raw meat. I wear gloves every time I touch raw meat. I'm sorry your going thru this. It's maddening isn't it

    · Share on FacebookShare on Twitter
  • wintersocks
    wintersocks Member Posts: 922
    edited April 2015

    I got a very bad case of atypical cellulitis 3 days after a gynae op. I think it was connected tho the medics say not. I find that hard to believe. I had a six day stay in hospital with IV antibiotics.

    I was told some people are just more prone to it. I keep thinking it will flare up again. I have had grazes and scratches since, but it has not reappeared.

    Five times is a lot. I felt very ill with it, I really hope you were not too poorly? I would be interested to hear more about this systemic idea.

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited April 2015

    Good - perhaps I mis-read but it seemed you were saying you did not think a systemic issue was involved so not going to see a ID Dr. Sorry.

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2015

    KatieJane, I'm so sorry to hear the beat goes on for you!

    Yes, yes to the infectious disease doc! With repeats of cellulitis a long term low-dose antibiotic usually solves the problem. And it definitely needs solving before any further surgery, so absolutely agree you're moving in the right direction.

    That said, not every ID doc is familiar with LE, so don't be afraid to ask him/her about his/her familiarity with it.

    Please do keep us posted. Gentle hugs,
    Binney

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015


    No problem Kicks!  My gut feeling is it isn't systemic but nothing surprises me anymore!!  I'm sure willing to check it out.  My appt. with the ID Doc isn't until May 7th but I will let you know what he says regardless.  And I will also let you all know what Dr. Massey has to say. 

    Wintersocks, yes I always feel pretty bad with each infection but the ones that have gone into sepsis have been the worst.  My fever was over 104 Fahrenheit and I felt like crap!!

    Lovemydobies,  sounds to me like you volunteer in HEAVEN!!!!!  Dobies are absolutely the best!!

    Thanks everyone!    Katiejane

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015


    Thank you Binney for you input.  I also feel the ID Doc is the place to start but I will ask about his knowledge/experience with LE. Surgery, for me would be an absolute last resort but I also know I can't keep having this happen-it's a big gamble in my mind.  The low dose, long term antibiotic has been discussed with my PCP and I'm not crazy about that idea either but sometimes we all must do things we don't want to.  I will keep you posted on what I find out.  Thanks again!    katiejane  Smile

    · Share on FacebookShare on Twitter
  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2015

    In addition to node transfer, will you also be looking into LVA? That's the microsurgical technique in which a lymphatic vessel is linked (anastamosed) to a vein in order to improve "drainage". When one of our local doctors started promoting that procedure, I thought it sounded less invasive than requiring a donor site. A quick look at Dr Massey's website does not seem to describe that option.

    I might consider the prophylactic antibiotic as a temporary measure if I were in your situation, until I could make a firm decision and be confident that insurance covers my choice of operation & provider! Best wishes for getting a handle on this - hoping that you find relief from further infections in the future...

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    I have looked into the LVA-honestly I really don't know which way to turn!!! I am so frustrated and confused-there is just no clear answer!  Like all of you ladies, I just want this to all go away!  Oh well, we know that's not going to happen!  I'm going to follow through with the infectious disease Doc & maybe a prophylactic antibiotic.  If that would take care of the infections I think I can manage without surgery.  Do any of you ladies take a prophylactic antibiotic?

    I did not get to speak to Dr. Massey as the day she set up for our phone conversation, I didn't get a call. She did call today and I missed her call so........I wasn't expecting to hear from her today.  I hope to maybe speak with her this week.  In her voicemail she did say she thought it might be an option to do a through evaluation with her in Charleston.  Maybe that wouldn't be such a bad idea???

    Thanks for letting me vent-the husband just doesn't get it!!  HA!    katiejane

     

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Well, I have decided that I will no longer do the extra precaution things- like antibiotic ointment and bandaids on small cuts and things like that. It makes no difference- I stIill end up with cellulitis and a 2-4day hospital stay on IV antibiotics. I'm tired of stressing about this crap!!! I am also so tired from fighting. I guess if I have cellulitis/ sepsis again and don't pull out of it then that's the way it's suppose to be. Sorry to be so down in the dumps but I am so fed up with no where to turn! Thanks for listening ladies!


    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2015

    KatieJane, I hear you, and I'm so sorry. I hope you'll follow through with the IV doc, but beyond that I sure do understand the need for a break from all the fussing around. Rest up, do something special for yourself (preferably something very chocolate!), and give yourself all the room you need.

    And please don't apologize for being down--we're all here because we get that part, for sure.

    Gentle hugs, prayers too,
    Binney

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Thank you Binney, think i'll have something very chocolate! Hugs! Katiejane

    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited April 2015

    You deserve a break!   I hope they find the answer.

     

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Susan, unfortunately there is no real answer. I thought I was doing EVERYTHING to prevent infection and worsening of LE. After the first case of cellulitis it does seem to make one more susceptible to it happening again- and so on and so on! After #5, 2 of which I became septic, I'm ready to explore additional options. The swelling is bad enough but the septic type infections are down right scary! I didn't beat cancer 8 years ago to die from treatment side effects! I refuse to live in a glass bubble. :)

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Just an update-- I have not heard back from Dr. Massey at all- very unlike her. I expected I might hear from her this evening since I know she makes patient calls on Sunday evenings. Otherwise, I would have let you ladies know what she had to say.   I am at a loss...

    katiejane

    · Share on FacebookShare on Twitter
  • concernedhubbyalan
    concernedhubbyalan Member Posts: 97
    edited April 2015

    My dw had her right reconstructed breast removed. (We like to freak people out and say she had a trilateral mastectomy.) We know full well what you're going through. 


    I know it's a pain to do all the precautionary stuff, but safe is infinitely better than sorry.

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited April 2015

    Hi everyone,   I have made my appointment on June 8th for my lymphedema evaluation with Dr. Massey.  Meanwhile, I will be seeing an Infectious Disease Doc before I head to Charleston.  Hopefully, I will have no more cases of cellulitis between now and then.

    Thanks, katiejane

    · Share on FacebookShare on Twitter
  • aussieched
    aussieched Member Posts: 244
    edited April 2015

    Hi Katiejane

    I was also diagnosed in 2007 and like you, I have been battling many episodes of cellulitis, and again I had a total of 30 nodes removed, and reacted very badly to the radiation, very very red even after the 1st dose of radiation, and by the end of it, I was deep red/purple with lots of bleeding and all the skin just melted off.

    I experienced my first bout of cellulitis about 4 years ago.  It was at the same time in hospital that they noticed 3 small red dots about the size of pin heads in my armpit.  Over the next 6 months it developed into a large raised red rash, in what was to become lymphangoma circumscriptum a disease caused by the number of lymph nodes taken out and damage done from the radiation.  There is no cure and I now have to live with multiple bouts of cellulitis and a very sore red armpit that weeps lymph fluid all the time.  I have also been advised it now makes me susceptible for angiosarcoma which can be more deadly than the breast cancer.

    Since then I have had multiple bouts of cellulitis, however once I knew what I had to keep looking for, I was able to get onto the antibiotics straight away, which kept me from lots of trips to hospital and days on the drip.

    I have found the best way to keep the infections away is to use a daily antibacterial wash.  I use it to shower with and ended up just using it for all my body.  Too much of a nuisance trying to wash specific parts with the antibacterial wash and then changing to another soap for the rest of me.

    I really don't like using the antibacterial wash with all the chemicals it would have, however I have found it to be the best way to stop any cellulitis.

    At one stage my doctor was wanting to put me on a daily dose of antibiotic to keep infection away, I have been able to avoid taking the drugs, just by using the antibacterial wash.  I use Phisohex and live in Australia, but I am sure you would be able to buy something similar where you live.

    Best wishes, and I hope you will be able to find something that can help.

    regards Ched

     

     

     

     

    · Share on FacebookShare on Twitter
  • juneping
    juneping Member Posts: 1,594
    edited May 2015

    katiejane - oh I am so sorry to read your multiple trips to the hospital. I think that frequent antibiotics isn't good for the health...

    Do you exercise? My LE specialist told me only exercise can move the lymphatic fluid. And certain food like coffee make the fluid thick and doesn't move. I wish you the best with the up coming appointmen

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited May 2015

    Hi Ladies,   A quick update----- I had my appointment with the Infectious Disease MD yesterday.  Basically, he said he did not feel this was a systemic immune deficiency problem and that is was localized infection in my LE arm.  Also thought since I had 2 episodes of cellulitis within a month of each other that maybe I wasn't treated aggressively enough with the first episode and the bacteria was laying in wait and reappeared as another infection.  He did not recommend a prophylactic antibiotic at this time but if the cellulitis returns in the next 3-5 months we will revisit antibiotic therapy.  He did not think the pneumococcal vaccines were the least bit helpful for the fight against cellulitis! 

    I will be seeing Dr. Massey in June for a LE evaluation so until then, I will be keeping my fingers crossed!     katiejane

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2015

    Me too, Katiejane! Thanks for the update, and please do keep us posted.

    Gentle hugs,
    Binney

    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited May 2015

    I'm glad you updated this I've been watching and waiting. 

    Hoping the best for you.


     

    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited May 2015

    Thanks Binney and Susan!  I will keep you ladies posted if anything new develops and after I see Dr. Massey on June 8th.   katiejane

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited May 2015

    Katiejane - This is a bit OT but are you in the Winter Storm Warning in WY? We're in the Blizzard Warning area in SD.


    · Share on FacebookShare on Twitter
  • Katiejane
    Katiejane Member Posts: 789
    edited May 2015

    Yes Kicks- we were under the winter storm warning but it is passing! Freeze warning for tonight! Here at the house, we only had rain, sleet, and snow but it really didn't accumulate. The ground though is very squishy! At the higher mountain passes there was about 11 inches. And to think I was out horseback riding this time last week! The good things about spring storms is they don't last and the snow melts quickly!! :Stay warm!

    · Share on FacebookShare on Twitter
  • Lusher61
    Lusher61 Member Posts: 9
    edited May 2015

    Hi there just read some of the posts am suffering about of cellulitis am on antibiotics for the second week and still sore itching really bad am going away in 5 weeks and wondering if flying will affect me anyway

    · Share on FacebookShare on Twitter

Categories