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HIGHLIGHTS OF Lymphedema   Emergencies and Medical Care Page

Cellulitis (Infection)

Special Considerations for Cellulitis with Lymphedema: When to Use Compression with Infection

Fungal Infections

Skin Reaction

Cardio-Pulmonary Problems

Standing Up to Medical Personnel

Guidelines for Surgery on an Arm, Shoulder, Hand or Breast with Lymphedema

 

LYMPHEDEMA EMERGENCIES AND MEDICAL CARE 

CELLULITIS (INFECTION)

If you have been treated for breast cancer, your hand, arm, underarm, breast/chest, and back on the affected side are at risk for developing lymphedema. Any area at risk for lymphedema is also at risk for serious and potentially life-threatening infection.

That's why any symptom of infection needs to be treated as an emergency.

Get medical attention immediately –

DO NOT WAIT!

The most common form of lymphedema-related infection is cellulitis. Here are some signs of cellulitis to keep in mind:

  • Warmth or tenderness when you touch your skin

  • Fever

  • Chills or general achiness

  • Pain

  • Itching

  • New or sudden swelling

  • Solid or splotchy areas of redness, or streaky red lines

  • Rash

Get medical attention immediately –

DO NOT WAIT!

Infection may follow any break in the skin of the affected area, even breaks that seem trivial or unlikely, such as:

  • insect bites

  • hang nails

  • paper cuts

  • pin pricks

  • minor burns

  • scratches

  • blood tests, IVs, injections, draining of seromas

But infections may also occur even when you can't identify any specific cause.

Get medical attention immediately –

DO NOT WAIT! 

Lymph fluid may stagnate in at-risk tissues even before a diagnosis of lymphedema is made.  It is warm and protein-rich – a virtual feast for infection-causing bacteria. Once infection starts, it can spread rapidly throughout the affected area and beyond, threatening systemic involvement.

Early treatment of any infection with antibiotics will stop it from spreading, hasten your recovery, and protect the lymph system from further damage. If oral antibiotics are not quickly effective, your doctor may admit you to the hospital for a course of IV antibiotics.

Get medical attention immediately –

DO NOT WAIT!

Even if you recognize the symptoms of infection and understand the reasons for quick action, it can still be easy to ignore an impending problem or deny its seriousness. Here are some of the excuses you may be tempted to use to delay seeking medical help:

  • This can't be happening to me – I've been taking good care of my lymphedema.

  • If I call my doctor and tell him I think I have an infection from a paper cut, he's going to think I'm a nut/wimp/hypochondriac.

  • I'm sick of doctors and hospitals!

  • It's after hours and I'll have to go to the emergency room – who wants to wait five hours to be seen?!

  • Nobody in the emergency room will know what to do about lymphedema anyway.

  • No point panicking – it's more sensible to watch and wait.

  • I'll just try some Tylenol first and call the doctor in the morning.

  • Who ever heard of a hangnail causing an infection anyway!

Get medical attention immediately –

DO NOT WAIT!

Here are some tips for dealing positively with the danger of cellulitis infection:

  1. Prevent infection by following safe practices, including protecting yourself from cuts, pet scratches, insect bites, burns (including sunburn) and dry skin.

  2. Carry antiseptic wipes, antibiotic ointment and band aids with you, and use them promptly for any skin break.

  3. Talk to your doctor about keeping a supply of antibiotics on hand. Discuss guidelines for using them when a doctor is not available or an emergency-room wait may be too long.

  4. If you suspect that an infection is developing, remove all compression garments or bandages and do not perform any self-massage. Compression and massage promote lymph flow and can contribute to the spread of the infection.

  5. If you notice reddened areas on your skin, outline them with a permanent marker so you and your doctor can recognize progression or improvement over time.

  6. At the emergency room or critical care, speak up promptly about your lymphedema or risk of lymphedema, and be prepared to remind the staff about your risk of cellulitis.

  7. Be prepared for quick action. Have a small bag already packed to take you with you to the emergency room, with everything you'll need in case you're admitted to the hospital, including:

  • an up-dated medical history, including diagnoses, surgeries, hospitalizations (with dates), and current medications and supplements (with dosages)

  • up-to-date articles about cellulitis (Printer Friendly Version here) to share with your health-care providers

  • the names and phone numbers of all your doctors and your lymphedema therapist (and friends too, of course)

  • a notebook and pen

  • any LE alert bracelets or arm bands you might have

  • a bathrobe and comfortable non-slip slippers

  • toothbrush, toothpaste, comb, brush, shampoo, and whatever other daily care items will make you comfortable

  • a good book or two or a crossword puzzle book and a sharpened pencil

  • and a treat – a few packets of cocoa mix to add to hot water, for instance

Follow your doctor's instructions for when to resume compression bandaging and self-massage for lymphedema.  Usually that will be 24 hours after the start of antibiotic therapy if the infection is clearing and there is no pain.  If you are allowed to resume massage before all redness is gone, avoid massaging over any reddened area.  The infection will likely leave you with a lot of swelling.  It may be helpful to make an appointment with your lymphedema therapist for a consultation or extra treatment as soon as the infection is under control.

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Special Considerations for Cellulitis with Lymphedema: When to Use Compression with Infection


1) The illness can become very severe very quickly: it is advised that people with lymphedema have antibiotics on hand to start at the first sign of redness, warmth, fever, pain and then seek appropriate medical care

2) The infecting organism can be unusual: recently a woman grew group B strep, usually associated with immunosuppression

3) Stagnant lymphatic fluid functions like an abscess: abscesses require drainage and cellulitis with lymphedema requires gentle compression to remove the infected fluid

4) Compression in lymphedema associated cellulitis: the "common belief" is to avoid all compression and manual lymphatic drainage. A literature search did not reveal any studies to support that belief, the only literature addressing compression and MLD in cellulitis associated with lymphedema comes from the International Best Practices Guidelines. The literature search did again confirm that infection harms lymphatics so prompt and successful treatment is crucial.

5) Knowledge of bandaging is CRUCIAL: sleeves and night garments are unlikely to fit in the acute phase of lymphedema associated cellulitis, and only multilayered bandaging will allow the gentle and accurate compression to assist in the resolution of the infection without over-compressing and inhibiting antibiotics to reach the area.

Outfield states:  I'm back in a sleeve today, after wrapping most of the week.  My sleeve didn't fit when I first tried after the redness receded.  I only know how to wrap because I insisted on learning back when I was first diagnosed, and that was because I had read about it here and on the SUSO site.  My CLT didn't think I'd need to do it.  She thought a sleeve and a night garment would be enough for me (which they generally are).  I think she was a little annoyed to teach me.  But if I didn't know how to do it myself, I'd be waiting until sometime next month to get in for an appointment and I'd still be too swollen for my sleeve.

One patient reports being hospitalized for 12 days with cellulitis in her leg. In spite of using several antibiotics, nothing was working. A surgeon who was called in examined her leg and told the nurses to wrap it, but neither the nurses nor the physical therapist would wrap it, fearing the infection would spread up the leg. When the surgeon returned the following day he wrapped it himself with four bandages. That worked where the other interventions had failed, and the patient was released to go home with a PICC line the following day.


From the International Best Practices Guideline:

  • Commence antibiotics as soon as possible , taking into account swab results and bacterial sensitivities when appropriate
  • During bed rest, elevate the limb, administer appropriate analgesia (eg paracetamol or NSAID), and increase fluid intake
  • Avoid SLD (self MLD) and MLD (by therapist)
  • If tolerated, continue compression at a reduced level or switch from compression garments to reduced pressure MLLB (multilayered bandaging)
  • Avoid long periods without compression Recommence usual compression and levels of activity once pain and inflammation are sufficiently reduced for the patient to tolerate
  • Educate patient/carer - symptoms, when to seek medical attention, risk factors, antibiotics 'in case', prophylaxis if indicated
  • So, this is the best scientific advice/evidence we seem to have: avoid MLD in the acute phase, but resume light compression ASAP, and MLD can be resumed when the acute phase of infection is over.

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FUNGAL INFECTIONS

Fungal infections can be a problem in warm, moist areas, such as the folds under the breast or in the axilla. Careful attention to hygiene will help, as well as using soft cotton in skin folds to absorb moisture. For persistent problems, talk to your doctor about the use of topical anti-fungal medications, or an anti-fungal spray powder to prevent repeat infections.

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SKIN REACTIONS

Chafing and blisters are possible problems of a poorly-fitted compression garment or poorly-applied bandages. Remove the offending compression as soon as you notice any irritation, and talk to your therapist about ways to remedy the situation.

Allergic reactions are possible to materials or dyes used in compression garments, or to applications of products such as It-Stays to hold the top of a compression garment in place. Garments are available in a number of different fabrics to address this problem. An experienced therapist or fitter should be able to help you find one that works for you. In extreme cases, cotton stockinette can be worn under the compression garment. A garment-donning aid like a Jobst Easy-Slide or a Juzo Slippee can ease the problem of applying stockinette and a compression sleeve without creases or wrinkles that can further irritate the skin.

Any new skin lesions should be checked out by a dermatologist or your oncologist to rule out cancer spread to the skin.

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CARDIO-PULMONARY PROBLEMS

When we've been treated for breast cancer, shortness of breath raises red flags about possible heart or lung damage from chemotherapy or radiation. Lymphedema treatment (compression bandaging and Manual Lymph Drainage) is designed to move lymph fluid efficiently out of the swollen tissues and back into circulation. If there has been damage to the heart or lungs, this dumping of fluid back into the blood stream can cause congestion in the heart or around the lungs that will show up as difficulty breathing. If you experience shortness of breath following lymphedema treatment, stop at once and see your doctor to discover the cause of the problem before proceeding.

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STANDING UP TO MEDICAL PERSONNEL

After all the indignities of breast cancer treatment, it can be hard to remember that your body still belongs to you. But it does: this is your arm, and lymphedema is for the rest of your life. Once you have educated yourself about the risks involved with lymphedema, the choices you make about protecting yourself from developing or worsening lymphedema are yours alone to make. When dealing with medical personnel, you may meet with objections to those choices, or eye-rolling, or an attempt to belittle your concerns. Remind yourself that their momentary irritation is nothing compared to the "swell" life-long battle that may lie ahead if you give in to risky practices. Should lymphedema develop or worsen, they will not be there to help you – so don't allow them be the cause of it.

BE PREPARED

In emergencies it may help if you are wearing medic-alert identification. Carrying with you a brief medical history that outlines your diagnoses, treatments, current medications, allergies, and specific instructions for lymphedema-related precautions may also prove useful.

When you have time to plan ahead for an invasive treatment, test or surgery, make sure you discuss your concerns with your doctor beforehand. Your doctor's instructions to leave your affected arm(s) alone should be written into the orders for the procedure.

BE CALM BUT FIRM

If any of your doctors show little understanding of your concerns, help them along with written material such as the "What We Want Healthcare Providers to Know" pages from this website. Suggest to your doctors that they consult with your lymphedema therapist, if you have one.

BE CLEAR


Even when a medical procedure is planned in advance and your doctor has acknowledged your concerns, labeling your arm yourself adds a further layer of protection and allows for greater peace of mind. Using a permanent marker (it comes off later with alcohol), you can write on your arm in all the places likely to be used for IVs or a blood pressure cuff. For instance, you can write "No BP here" on your upper arm and "No IV here" in the crook of your elbow and the back of your hand. Write "Restricted Extremity" along the length of your arm, a phrase that alerts medical personnel to leave that arm completely alone. If your doctor is willing, have her or him sign your arm for good measure.

For procedures that involve being unconscious, even briefly, make an effort to talk with the anesthesiologist and someone from the recovery area beforehand, so you can be certain they'll be aware of your needs even when you're not able to express them. Hand-outs can be helpful for all the medical personnel you meet along the way.

BE GRACIOUS

Lymphedema is a complication for healthcare providers as well as for patients. When healthcare providers take the extra steps to protect you, thanking them can make their day brighter and help assure the positive experience will be repeated. Besides a simple, in-person expression of your thanks, consider writing a note of appreciation to the unit supervisor or the hospital's Patient Relations department. If you can remember the specific names of helpful individuals, they'll be pleasantly surprised to receive word of your satisfaction from their employers.

IF YOUR LYMPHEDEMA RISK IS BILATERAL: ALTERNATIVES TO USING YOUR ARMS

If you have had bilateral surgeries for breast cancer (even if one or both were prophylactic) both arms and both sides of your chest are at risk for lymphedema. You may choose
to have blood pressures taken on your thigh or calf, injections done in your thigh or hip, blood tests in your foot, and IVs placed in your foot or neck. To do these things successfully, some extra preparation may be necessary.

The first step is to get it in writing. On the order sheet for a blood test, your doctor should write, "Draw from foot only," and in the surgery or test orders, "No IV, either arm." It may be up to you to assure that the person placing the IV is adequately trained and experienced to do it in an alternative location. When scheduling tests requiring IVs, call ahead to make sure an experienced professional
will be available. For surgical procedures, arrange beforehand for the anesthesiologist to do it.

Both blood draws and IV insertion in your foot will be easier if your foot is warm. You can wrap a hot water bottle or microwavable heating pad around your foot on the way to the lab, being careful not to burn the skin. Staying well hydrated for the day or two before can help too. Another strategy for success – but harder to pull off – is to relax. Asking to be allowed to lie down for blood draws can make relaxation easier.

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GUIDELINES FOR SURGERY ON AN ARM, SHOULDER, HAND OR BREAST WITH LYMPHEDEMA

Unfortunately, arms and chests with lymphedema (or at risk for lymphedema) are not immune to other disasters. Breast cancer treatment itself seems to raise the risk of functional problems like carpal tunnel, tendonitis, tennis elbow, and rotator cuff injuries. Reconstruction surgery may need to be completed even in the presence of breast or chest lymphedema. Injuries from falls and accidents can happen too, and may require surgical intervention.

As a general rule, it only makes good sense to exhaust all the possibilities for non-invasive treatments before resorting to surgery in any area with lymphedema or at risk for it. But when surgery becomes necessary, the following guidelines can help you sail through your surgery and recovery with as few complications as possible, and return your arm and chest to manageable proportions promptly.

1. Make sure all doctors who treat you are aware that you have lymphedema, and review with them the problems and precautions involved. Don't assume they know how to properly protect you: be specific about your needs and concerns.

2. Consider requesting that your doctor and lymphedema therapist consult about ways to control new swelling before, during, and following surgery.

3. Make sure all necessary accommodations are worked out with your doctor before the surgery date. These include avoiding blood pressure, blood draws, IVs or injections in the affected arm. If both arms are involved or at risk, legs and feet can be used for these purposes instead.

4. If tourniquets will be used (for example, with carpal tunnel surgery), discuss the possibility of reducing tourniquet time to a minimum to limit the impact on the compromised lymphatics.

5. Because the presence of excess lymph fluid in the tissues increases the risk of infection, discuss the use of oral antibiotics the day of the surgery and continuing for several days afterward.

6. See your lymphedema therapist in the days before surgery for baseline measurements and for help in reducing any swelling to a minimum. Take extra precautions on your own as well during that time (extra self-massage, wrapping rather than wearing garments, attention to skin care) to be sure that your arm or chest is as free of excess lymph fluid as possible.

7. Arrange with your doctor about how soon compression bandages can be applied following surgery. The best arrangement is to have a trained family member or lymphedema therapist apply compression wraps over the surgical dressing immediately following surgery in the recovery room, and daily following dressing changes. A night garment with a zipper for easy application can be used instead, and is easier to manage in a hospital setting.

8. Following surgery, monitor your arm carefully (or have a loved one monitor it) in the following ways:

  • Let your doctor or hospital staff know at once about any unexpected or unusual pain or swelling. If it does not resolve promptly, insist on appropriate testing for Deep Vein Thrombosis (blood clot formation).
  • Redness, warmth to the touch, fever or undue swelling may indicate cellulites (infection). Let your doctor know immediately if it continues or spreads.
  • Return to your therapist for help in monitoring the post-surgical swelling, and consider some professional Manual Lymph Drainage (massage) or even a repeat of your initial Complete Decongestive Therapy if necessary

With the cooperation of your medical team and your own alert self-care, you can look forward to a smooth recovery and a quick return to health and lymphedema control.

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Page Last Modified 02/15/2014

All medical information presented on this page is the opinion of
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