Cellulitis--arrgh

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Hildy910
Hildy910 Member Posts: 319
edited June 2014 in Lymphedema

So here I am up in NH at our family cabin with the kids, a couple hours from home. DH has to work this week, so we are solo, although we have friends coming in.

In the meantime I am increasingly convinced that the rash on my left arm, where I have mild lymphedema, is cellulitis. It started from a bug bite in the crook of my elbow. However, it is not painful, although it is itchy. It looks more like poison ivy but I think it's cellulitis.

I'm already taking the antibiotics script the plastic surgeon gave me to keep on hand for this very reason. It still seems to be spreading so I guess the kids and I will head to the ER to get it checked today, but part of me wonders if I should come home to have it looked at instead. And if I do, who should I have look at it? Do I notify anybody from my BC team of doctors? My oncologist certainly isn't an LE or cellulitis specialist. I think I'll give my plastic surgeon a call, as I am worried about losing implants. I think what I really need is a dermatologist who knows LE.

Also, how infectious is cellulitis? Should I be covering it?

Plus, we have a friend of my daughter's who is supposed to come in today--should I cancel that? What if they want me to stay overnight at the hospital? I know I'm being paranoid but on the other hand it's a possibility.

So. Pissed. Apologies for the rant!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2013

    Oh, Hildy, what a mess! I'm so sorry! Sure hope your kids are of an age to be a least a bit dependable. Quick answers, though by now you've undoubtedly already taken action.

    It's not infectious to others, so no worry on that score.

    Itchiness is among the possible symptoms of cellulitis. Of course it's among the poison ivy symptoms too, but if you have poison ivy you probably need the antibiotics anyway, and for sure you need to have it checked out.

    Rule of thumb for the ER--repeat the words "lymphedema" and "cellulitis" to everyone who sees you. It may not occur to them, so it helps to say it often and make sure they consider it. Cellulitis is not limited to people with lymphedema, so that is something they'll have heard of and know how to deal with. Just don't WAIT to get help.

    Do call the surgeon--as no doubt you already have--and follow his suggestions. Less worry at home, for sure, where you know the help you can call on, as this is a real emergency. But if they get the right antibiotics it should begin to reduce the area pretty rapidly.

    Hope you cancelled the visit from friends for today, and I also hope you can reschedule that soon and have a worry-free time at the cabin next time!

    NO APOLOGIES! We get this, and I'm grinding my teeth with you. Please let us know how it goes.

    Hugs, prayers, chocolate!
    Binney

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  • planetbananas
    planetbananas Member Posts: 206
    edited July 2013

    DON'T WAIT! it is better to be safe than sorry. I waited and ended up in the hospital for 11 days. I'm not suggesting that that's what I think will happen to you, its just after this experience I take things much more seriously than I did before. I had never had any infection like that before so I put off contacting the doctor. In my case it was a mistake.

    Good luck to you.
    edited to add:, watch your temperature: if it starts to rise go Immediately to the ER

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2013

    Hildy, I'd also recommend going to the ER: as Binney said, even if it's just poison ivy, you'd want to be on antibiotics to avoid infection.

    The average physician has no idea how sick a person with lymphedema can get with cellulitis: I just read the chart of a patient who has primary LE in her legs and got a raging cellulitis, and the physician just couldn't understand how she got septic with "just" a cellulitis...At least they wrote lymphedema in the history. Maybe because the patient is getting PT for her legs and is aware of LE/cellulitis and told them.

    Doesn't it just stink?

    The last time I got a red area on my arm after some sun exposure, I took a cell phone picture of it and sent it to my LE therapist, who recommended starting antibiotics. I had gotten cellulitis on the upper arm after taking the CLT class, and this didn't feel the same: I didn't feel ill, but better safe than sorry and I took them and it went away.

    We need to err on the side of caution.

    Let us know how you're doing.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    My 2 cents worth

    Please dont wait as the others have said. Cellulitiss is NASTY. Period. Also watch the red mark and see if it is expanding.

    All the best.

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  • Hildy910
    Hildy910 Member Posts: 319
    edited July 2013

    Hey everybody,



    Thanks for the well wishes--I did go to the ER this morning, where they were surprisingly knowledgeable about lymphedema--knew not to do BP on that arm, etc. The doctor thought that the original rash was a contact dermititis reaction to the bug bite, but also saw what she thought was early cellulitis. she switched out my script for a stronger antibiotic; I had also contacted my PT, who is great, and at her urging had a starter dose of the Clindamycin administered via IV.

    So I hope to wake up to less pink tomorrow. Fingers crossed..

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  • carol57
    carol57 Member Posts: 3,567
    edited July 2013

    Wow, nipped in the bud because you were so quick to see a problem and do something about it.  How fortunate that you also got such terrific treatment at the ER.

    Musical gives a good reminder of the very wise practice of watching for pink expansion. It's often advised here to take a sharpie marker and draw a circle on the splotch's border, so it will be absolutely obvious if the thing gets any larger.

    I'm so happy you're in charge of the cellulitis instead of it taking charge of you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    You did well Hildy. Of course these things HAVE TO HAPPEN right at the most annoying inconvenient time. Therefore youre allowed to rant Smile . Some of Binneys well known Choccy wouldn't go amiss either. Wink .

    I had one occurence of cellulitis pre BC on the shin. Prob about 15 yrs ago. (wild guess) and to this day it still aches occasionally if it's hot or cold. Also it's left a mark which shows up at sudden temp changes. I didn't have a clue what it was and just piled off to the Doc in case. Apparently mine was caught in the nick of time. Any longer and it would have been hospital. It was then he drew a patch around it similar to how Carol described but with a tiny bit of leeway and told me if it went past that boundary within a certain time to get back quick smart. In the meantime of course it was oral antibiots.

    Anyway Im so grateful I followed my gut feeling.

    What a wonderful resource we have here at BCOrg where we can all post our help tips or just encouragement or to get help.

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  • carol57
    carol57 Member Posts: 3,567
    edited July 2013

    I have never had to deal with cellulitis, thankfully, but were it not for this forum, I would have absolutely no clue of what it looks like, feels like, and what to do and when to do it if it pops up. No kidding Musical; this is an amazing resource and I thank every single person who contributes.  Rants are helpful, too...they remind us that we're not alone in the LE frustration zone!

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  • Hildy910
    Hildy910 Member Posts: 319
    edited July 2013

    Totally agree with you both--very grateful to this forum for all the support it has given me.

    Happy to report that the pink has faded considerably. Yay!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2013

    Hildy, hope you can enjoy the vacation now. So glad you found responsive physicians and got the care you needed.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Oh thats great news Hildy. YES!!! Lets hope now you can get on with what you want to do without that beast attacking you!

    I can only wonder what those who've had multiple instances of this horrid thing have had to put up with or are still putting up with, especially with compromised lymphatic systems.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2013

    Hildy, YES! Brava for your quick action--and for the knowledgable ER staff. Whew! Take it easy and let your body heal.

    Hugs!
    Binney

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  • Hildy910
    Hildy910 Member Posts: 319
    edited August 2013

    Well,  I'm back at home and wanted to come back and finish the story, because two days later, the red returned around the rash and spread beyond the originial site , freaking me out and causing me to come home early and go to my local ER, as well as contact both plastic surgeon and oncologist. 

    The ER doctor gave me an IV booster, and did a viral and bacterial culture on the rash (blisters, so there was fluid to culture, apologies for TMI).  I was told to continue on the klindamycin;  I continue to freak out because I was convinced that I needed IV drugs....

    Until (and here is where I need a really tiny, embarrassed font) I re-read the directions on my med, and instead of taking one pill three x day, I was supposed to be taking 3 pills three x day.Embarassed I don't know how I missed that, I'm very careful about this stuff in general.  So yes, I was on a pediatric level of antibiotics, no wonder the red came back! Commenced correct dosage, cellulitis disappeared in a day.

    In the mean time, the viral culture came back positive for shingles--could have knocked me over with a feather, becuase it wasn't particularly painful, and was a relatively isolated patch--didn't follow a nerve pathway or anything like that.  I am convinced the bug bites triggered the shingles.  

    The doctors think that perhaps the cellulitis was an inflammatory response from the shingles rather than lymphedemic cellulitis, but if that were the case, why would it respond so quickly to the correct antibiotic dosage?

    So. A cautionary tale to triple read your medication directions!

    Signed,

    Hildy, Zipperhead of the year candidate

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2013

    Hildy, are you on acyclovir for the shingles also? Who would think to take three pills at a time??? No one.

    Feel better.

    Shingles can get infected, and from what I read, it's still worth getting the shingles shot, even after you get them.

    A law of nature that it would happen on your LE arm! Too much

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2013

    Hildy, thanks so much for up-dating us--and for the warning! That was sure an easy mistake to make, considering how few meds are prescribed to take three at a time. You might alert your pharmacist to make a point of telling patients that when they pick up their meds--that's one of those special cases where personal interaction could have made a huge difference. And what if you hadn't thought to re-read the instructions?Surprised Plenty of us wouldn't have, and could end up hospitalized.

    Really glad you're finally on the mend. Stay well!
    Binney

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  • Hildy910
    Hildy910 Member Posts: 319
    edited August 2013

    Binney, I think my regular pharmacist would have done so, but the perils of vacation include unknown Walgreens. Laughing  To be honest, I am not sure what made me re-read the instructions, but happy I did!

    I have topical antivirus ointment for the shingles, but to be honest they are nearly gone. It must have been a very mild outbreak, and actually, I'm rather pleased with my LE arm for behaving itself pretty well, all in all. 

    Definitely going to get the shingles vaccine--now I don't have to wait till I'm 60 for insurance to pay...

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2013

    Hildy, lol! That sure was the hard way to get your insurance to pay up! Whatever else happened, you've sure managed to keep your good spirits intact. Your LE arm deserves a reward for behaving so well--I suggest chocolate, taken orally.

    Hugs,
    Binney

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2013

    gee, sorry I did not alert forks to the dreaded shingles,on my WW boards we all were parnoid about getting the shot

    lowered immune system can cause you to have the outbreak, yeap me got it 6 months after ending rads while on vacation....on a boat...off the coast of Maine

    because I was holding off till insurance would cover it.....dumbo dumbo dumbo

    I did get the shot as soon as my onco said I could as I sure do not want a second time!

    get the dang shot!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    So glad things worked better than they could have Hildy. Who ever heard of taking 3 pills at once? Obviously it happens but I havent heard of it. You overlooking it was certainly not your fault. They shouldve made a point in telling you.

    Only one thing to say about shingles.... UGH!

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