Bad Burn on LE arm & Out of Town-- Please HELP!

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mom2twins34
mom2twins34 Member Posts: 185
edited June 2014 in Lymphedema

Hi Ladies,

I need your wisdom...  The stars aligned & made it possible for us to take a last-minute trip to Florida this week.  When we arrived on Monday I slathered on the sunscreen--high SPF from Target--and kept reapplying, but ended up getting badly burned--primarily on my LE arm.  I've been massaging aloe onto it & wearing my sleeve & gauntlet--which is terribly painful to put on because of the burn.  But the edema has been increasing all week.  Now it looks worse than it ever has.  It is bright red from the burn--hand to shoulder, so I think this is what is causing the pain, but it is the swelling that concerns me.  The arm--especially below the elbow--is full and firm and very large.  

What can I do at this point?  My physical therapist (the only one in her office who knows anything about LE) is away.  I'm in Florida & don't have insurance when out of state.  And I'm getting on the plane to go home tomorrow night, which will inevitably make the swelling worse.  Would icing it help?  Damage it more?  Should I wear the sleeve or not?  It is really difficult to get it on at this point because my arm is so large--am I making it worse by struggling to get it on?  

I'm at a loss as to what I should do.  I've kept myself covered since Monday to try to keep the burn from getting any worse.  All I wanted was to take a little vacation with my kids and feel somewhat normal for a change.  I guess that is too much to ask!

Thank goodness I can come here and feel like I'm not alone...  Thanks for any insight!  

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    mom2, NO, don't try to put the garments on at all--much too irritating. Keep the arm elevated, stay really well hydrated and stay out of the sun.

    Okay, no out-of-state insurance coverage, but that doesn't count emergencies, I hope. Because if I were you I'd head to the ER right about now. I know that seems extreme, but with LE, new swelling, redness, and a burn, it's just normal care. You're looking at the possibility of serious systemic infection, and you sure don't want to be dealing with that on a plane trip home. Here's information about LE emergencies:
    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    Please don't take chances with this. And for goodness sake keep us posted!

    And, hey! I am sooooooo sorry this happened. But you're sure right: we're all here for you.
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    I agree with Binney, even restrictive insurance should cover emergencies, and as this sounds like a cellulitis--it is an emergency and I'd advise that you call the insurance and get approval to go to an ER.

    If for some reason that doesn't work out: many times, an out of state pharmacy will accept a prescription in an emergency, if you can reach your doctor.

    Other idea would be a Minute Clinic in a CVS--they're for minor emergencies, but can prescribe.

    Please, cellulitis can be life threatening.

    I'm so sorry the fun vacation has turned into this.

    Kira

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  • mom2twins34
    mom2twins34 Member Posts: 185
    edited June 2012

    Thanks so much, Binney & Kira...  I guess cellulitis would explain my fever and the flu-like feeling I've had the past couple of days.  It honestly never crossed my mind before reading this since I wasn't familiar with the symptoms--I just chalked the other things up to getting sick while on vacation.  

    I definitely don't have any type of coverage here, but I just paged the oncologist on-call at home.  I don't know the doctor they named, but I'm hoping he'll help. 

    I'm still hoping it's nothing, but it has never looked like this before.  I'm not an emotional person, but I'm sitting here in tears...  Thank you so much for your wisdom and understanding.  It really does help so much.  I will let you know what he says... 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012
    mom2, here's a cyber (((((hug))))) that comes with prayers for calm and a quick return call from the onc. Hang tough! (And stay hydrated),
    Binney
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  • crystalphm
    crystalphm Member Posts: 1,138
    edited June 2012

    Your symptoms you are feeling, flu like, hot and cold, are also normal sunburn feelings. But I do think you need expert medical advice about flying home...and ruling out cellulitus.

    Staying very well hydrated and keeping your arm up is the best way to go (and possibly antibiotics). Is there anyway you could have your arm wrapped to fly?

    Considering no insurance, I would look for the clinic at CVS. Fantastic advice above...I am glad I read this.

     I have gotten seriously burned twice now, which is why your post caught my eye, but not sunburned...

    Please let us know what is going on, i will be thinking about you.

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  • mom2twins34
    mom2twins34 Member Posts: 185
    edited June 2012

    Thanks so much, Binney, Kira & Crystal...

    The oncologist called right back after I posted and also said that it sounded like cellulitis and to get myself to an ER.  Because of the no insurance thing, I followed Kira's advice and went to the CVS clinic, where they took one look at my arm and said that I needed to go to an ER.  After explaining the insurance issue, she said me to an urgent care facility about 1/2 hour away.

    They were terrific.  I actually just got back.  The doctor had seen it before, so he knew what he was looking at.  He said he'd prefer that I be in a hospital getting antibiotics through IV, but gave me an antibiotic injection in my bum & prescribed oral antibiotics (and percocet--which I didn't fill--pricey with no insurance!).  He said that should hopefully be enough to get me home (late tomorrow night).  And that if I'm still not doing well when I get back, to just head to the ER at home.

    He said it was good that I came in when I did.  I credit that to you girls.  I hadn't even considered the possibility.  I just thought it was an aggravation of the LE and that it was disfiguring but "harmless".  I am REALLY grateful for your knowledge and your support...  xo

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Mom2, I just feel so bad that you're dealing with this!Frown It sounds like you hooked up with some good people. (And what a chorus of "Go to the ER!"-- good grief!Surprised) Rest up, elevate , drink plenty of water, and if it's spreading tomorrow morning instead of receding please don't take chances with a delay in further treatment.

    Prayers for quick response to the antibiotics, and a safe trip home.

    Real gentle hugs,
    Binney

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  • mom2twins34
    mom2twins34 Member Posts: 185
    edited June 2012

    Thanks, Binney...  I probably won't be back online until I get home again, so I just wanted to say that you've been a HUGE help...  Thanks for the hugs & prayers, too...  I needed them today!  :-) 

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2012

    mom2--I hope you have found some relief today with the meds and have a smooth flight home.  Please take care of yourself! 

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  • Marple
    Marple Member Posts: 19,143
    edited June 2012

    Mom~I hope your arm is improving.  This advice is too late for now but next trip have a prescription of antibiotics on hand.  With any luck you'll never need them again.  Gentle hugs.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited June 2012

    It is so good to know you got help that you needed in spite of the insurance problem.

    I carry a prescription of cipro around with me (the actual pills) just for a travel emergency,

    and no doctor told me this, my lymphedema therapist told me to  always have this.

    Please take good care!!!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    Mom2, when you are safely through this experience, please get in touch in with your insurance about emergency out of town coverage. I used to work for a medicaid HMO, and while there was no usual coverage out of state, emergencies were always covered.

    Right now, the important thing is that you got treatment. 

    Please let us know when you get home safely and how you do.

    Compression on the plane is an issue, the general rule is no compression until the infection is starting to respond to antibiotics. You should use your judgement, and have them in your carry on, but you may be unable to wear them, so just elevate, do fist pumps and hydrate. And get to an ER when you get home.

    I also travel with antibiotics, and knew a woman who took a celebration trip to Punta Cana to celebrate the end of radiation, and I gave her keflex, and she got a whopping breast cellulitis, and they tried to admit her, and she took her keflex and flew home. She brought in the ER records in Spanish.

    Safe travels, quick healing, and save those bills and send them to your insurance when you have the energy.

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012
    Mom2, hoping you're home, safe, getting well, resting up (with twins?!! Nah!), and being pampered. Keeping you and your family in my thoughts and prayers as you get your feet back under you. Let us know how you're doing as soon as you're able,
    Binney
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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2012

    Mom2--I have been watching for a progress report.  I hope all is okay.  Been thinking about you.

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  • Marple
    Marple Member Posts: 19,143
    edited June 2012

    I hope no news is good news!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012
    Mom2, whenever you get back here to us, we just want you to know for sure you're on our minds. Hoping you're resting easy and feeling much better by now.
    Be well!
    Binney
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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2012

    Mom2--hope all is okay.  Your silence is unnerving.  Thinking of you. 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    Mom2 hasn't been on bc.org for 5 days. I am worried also, and really hope she's getting the care she needs.

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  • my2boys
    my2boys Member Posts: 339
    edited June 2012

    I hope everything is okay with her...

    A similar situation happened to me last summer.  I went to Boston for a family vacation.  I was planning on only being gone for 3 days.  As soon as I arrived, I noticed redness and burning developing in my arm.  Started to feel a little sick by nightfall, so I called my oncologist's office and spoke with the doctor on call.  He told me to go to the emergency room and I flat-out refused to do that so he prescribed duracef over the phone to a nearby pharmacy and made me promise to go to the emergency room if I didn't start to feel better.  By the following morning I was feeling relief and by the time I arrived home, it was cleared up pretty well.  Continued the duracef for another week and I was good to go.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited June 2012

    I am concerned about Mom2 as well...I hope she posts. her mind may be in so many places just coping that she forgets. Understandable.

    There is a company that sells sun clothing and I think i am going to buy a large shirt for the shore this year, I had no idea a sunburn could cause such severe damage.

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  • mom2twins34
    mom2twins34 Member Posts: 185
    edited June 2012

    You girls are lifesavers--literally!  Thank you all so very much for your care and concern--binney, kira, crystal, becky, marple, my2boys...

    I've been in the hospital since Saturday...  So glad to be home now, but just feeling so physically and emotionally beaten up...

    Thank you for helping me get the help I needed.  Had I not posted and gotten such helpful and supportive responses, I would not have known what I was dealing with and would have just waited as it continued to get worse.  What I thought was a terrible sunburn (which was baffling to me since I had layers of sunscreen and my LE sleeve/gauntlet AND a long-sleeved shirt on so I didn't know how a sunburn was even possible on that arm!) wasn't one at all.  When I think of slathering aloe on and trying to squeeze my giant, painful red arm into my sleeve repeatedly last week as my symptoms worsened, I am SO grateful that I finally posted.  And that you were there to help. 

    By the time I went in, things were bad, but my outcome could have been much worse if I hadn't had your help...

    I can't thank you enough...

    And reading your posts tonight has lifted my battered spirits...

    Hugs to you ALL--(and extra hugs to my first responders--binney & kira--whose quick responses helped me get in to urgent care & get some treatment started just before they closed Friday night.)...

    xoxoxo

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Mom2, everybody at my house is SOOOOO glad to hear from you!SmileCool(hmmm, I can't find a smiley that's going "whew!!!") And what a relief it must be to be home at last! I hope you have some willing hands to help out there so you can relax and get your strength back without having to jump right back into the fray.

    Stay well hydrated, keep your arm elevated, and keep up the deep abdominal breathing whenever you think of it. You'll soon be feeling like yourself again. Looking forward to that with you!Smile

    Be well,
    Binney

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  • mom2twins34
    mom2twins34 Member Posts: 185
    edited June 2012

    Binney, thank you from the bottom of my heart!!!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    Mom2, it's so great to hear from you, do what Binney says: take it very, very easy, and get the help you need. We've all been hoping you made it home and got the care you needed, and you did!!! And you're better!!!!

    Phew.

    Kira

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited June 2012

    So good to hear from you!!!! I am so relieved you are on the road to recovery.

    I am so surprised, so this was cellitius and not a sunburn, I would have thought it was a sunburn too!

    I am just so glad you are well!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    I am just reading this thread for the first time, and all I can say is wow! Thank goodness you are okay and recovering. What an experience, and such an eye opener for all of us as we head into the summer months. How easy it would be to confuse the redness of cellulitis with sunburn. The ladies here are lifesavers. Feel better, Mom2twins.

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  • Marple
    Marple Member Posts: 19,143
    edited June 2012

    Mom2, boy oh boy, what a time you've had.  Thankfully you thought to come to the boards to post.  And thankfully you received the advice you needed.  I'm so glad you are healing.  Be kind to yourself and let others do the same.

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  • my2boys
    my2boys Member Posts: 339
    edited June 2012
    Glad this nightmare is behind you and you are on the road to recovery. Laughing
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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2012

    Mom2--I kept opening this thread every day to hear from you and my heart dropped each time you had not logged in.  I can now breath a sigh of relief.  Please take care of yourself.  I am so glad you listened to Binney and Kira. 

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  • mom2twins34
    mom2twins34 Member Posts: 185
    edited June 2012

    Thank you so much for all of the great support...  I really can't thank you enough...  

    I was hoping to come on today and post something positive, but boy, this has really wiped me out...  And it seems like the oral antibiotics aren't doing as well as the IV drugs were.  Started to feel worse last night, fever crept back up today, and this afternoon I found that it is now in the areas where fluid tends to accumulate in my chest and back.  Don't know if it has spread or if the infection is just working its way out of my system?  They had infectious disease & oncology overseeing my care when I was in the hospital (they think that the cellulitis developed from a staph infection I picked up during my last hospital stay) and before they discharged me the other day, they said I might see more blistering, etc. because all of the fluid would need somewhere to go, so maybe it's just part of the process? Plus I haven't been drinking much and had to get back into the swing of things with the kids as soon as I came home so I haven't been able to rest much. 

    I'm really afraid of ending up back in the hospital.  I'm just hoping I can hold out until my follow-up appointment with the oncologist on Monday.  So I'm going to follow your advice tonight and really hydrate and elevate--and go to bed!  They gave me this giant foam pillow contraption at the hospital to keep the arm elevated--I haven't used it yet, but I'm going to wedge my arm in there and go to bed now.  I'm hoping the fluids, rest & elevation will help the antibiotics along and make it all much better by morning!

    Next time I will try to have a much more positive post!  :-)

    Thank you so much for your great advice and for just being there for me.  Thank goodness for all of you!    

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