Understanding wounds with lymphedema

Lymphedema is long-term swelling that builds when the lymphatic system cannot carry fluid out of an arm or leg as fast as it collects. The lymphatic system is a network of thin vessels and nodes that returns fluid to the bloodstream and helps the body fight infection. When it falls behind, fluid that is rich in protein settles in the tissue under the skin.

A lymphedema wound is any open area on a limb swollen this way. It may be a shallow raw patch, a blister that has burst, a split at the bottom of a skin fold or a deeper ulcer. Most are on the lower legs, ankles and feet. What they share is the setting: skin that is stretched, damp and slow to repair itself.

What the treating clinician looks at

The care plan for a lymphedema wound has to fit the person who will live with it. The treating clinician weighs practical questions alongside the clinical ones:

  • Can you reach your own feet, and do you have the hand strength to manage wraps or garments?
  • Who is available to help, and at what times of day?
  • Where do you rest, and can the limb be raised there?
  • What will you wear on your feet over the wraps?

The answers shape the orders. A plan built on a garment that nobody in the house can put on will not last. Gateway then coordinates the supplies, any home health involvement and the follow-up schedule the clinician sets.

Local context: South St. Louis

In South St. Louis, many homes are apartments or older houses with the bedroom up a flight of stairs. Stairs are a real obstacle with a heavy, wrapped leg and bulky footwear, and some people end up sleeping in a chair downstairs with their legs hanging down, which makes swelling worse. A home visit lets the treating clinician see that setup and plan around it. When Gateway schedules the visit, we ask about buzzer entry, elevators and parking so the clinician can reach your door.

Brick defines the south side. There are bungalows and gingerbread-style houses in St. Louis Hills, narrow shotgun homes on The Hill, row houses in Soulard, and two-family and four-family flats nearly everywhere. Front steps are steep, gangways are narrow and parking is on the street. Senior apartment buildings, assisted living and skilled nursing facilities are spread through the neighborhoods as well. Gateway arranges partner clinician visits in each setting. Tell us if the patient lives in an upstairs flat or needs help getting to the door, so the visit is planned with that in mind.

When care happens at home

Supplies run out quickly when a lymphedema wound is draining. Absorbent dressings, padding and wrap materials may be changed several times a week, and going without them for even a day or two can set the limb back. Gateway coordinates supply orders with the treating clinician’s orders and follows up with the supplier on delivery to your home.

Tell us when you are getting low, well before the last box is opened. It also helps to mention practical problems, such as fluid soaking through to bedding or furniture, or dressings that will not stay in place overnight. The clinician can often change the dressing or the plan to deal with them.

For residents of nursing and senior living communities

In a skilled nursing facility, a lymphedema plan succeeds or fails on consistency. A wrap put on firmly by the day shift and loosely by the evening shift does not control swelling, and gaps of a day or two let the limb refill. The treating clinician writes orders that are specific about the dressing, the compression and how often each is changed, and reviews them with the nurses who will carry them out.

Gateway coordinates the visit schedule with the facility and sends the orders and visit notes to the nursing team. Staff questions that come up between visits go back to the clinician.

What to report and when to call 911

Changes in the swelling itself can point to something beyond the wound. Tell the treating clinician about:

  • Swelling that increases quickly over a day or two
  • Swelling that moves higher, into the thigh, groin or belly
  • Rapid weight gain, or shoes and garments that suddenly do not fit
  • Needing extra pillows to breathe comfortably at night

Sudden swelling and pain in one leg, often with warmth in the calf, needs urgent medical evaluation because it may be a blood clot. Call 911 for chest pain, trouble breathing, coughing up blood, fainting, or a racing heartbeat with lightheadedness.

Why primary care matters here

Because lymphedema lasts longer than any single wound, someone needs to hold the long view. A primary care clinician can track how often skin infections return, check the feet and toenails for the fungal problems that let bacteria in, and serve as the point of contact for the other specialists you see.

Gateway arranges wound care and primary care together for this reason. When the wound visits wind down, there is already a clinician who knows the history, the garments in use and what an early flare looks like for you. Questions such as who reorders garments, and how often the limb should be rechecked, have a place to go.

Primary care at home in South St. Louis →

Arranging wound care with lymphedema in South St. Louis

Clinicians and facility staff referring a patient for wound care with lymphedema in South St. Louis can call 314-325-0126 or fax 314-786-7966. Helpful to include: demographics and insurance, the working diagnosis, recent wound notes and measurements, current orders, the medication list and relevant test results. Please also tell us who should receive the treating clinician’s notes afterward. The online referral form takes contact details only, so clinical records should come by fax, not through the form. Gateway confirms that the referral arrived, checks availability for the patient’s address and lets your office know what has been scheduled.

South St. Louis patients are discharged from several hospitals, most often SSM Health Saint Louis University Hospital, Barnes-Jewish Hospital, SSM Health St. Mary’s Hospital in Richmond Heights and Mercy Hospital South. Gateway is an independent company and is not affiliated with any of them. Hospital social workers and case managers can refer a patient going home to the south side by phone or fax. Family members can call as well. We ask for the discharge summary and current wound orders, find out who helps the patient at home, and confirm a partner clinician’s availability for that neighborhood.

  • County: City of St. Louis, Missouri (an independent city)
  • ZIP codes: 63104, 63109, 63111, 63116, 63118, 63139
  • Nearby hospitals: SSM Health Saint Louis University Hospital; Barnes-Jewish Hospital; SSM Health St. Mary's Hospital in Richmond Heights; Mercy Hospital South (not affiliated with Gateway)
  • Nearby communities: St. Louis City, Downtown St. Louis, Affton, Shrewsbury, Maplewood, Central West End
  • Care settings: Private homes, skilled nursing, assisted living, memory care and rehabilitation

Other conditions and nearby communities

Read the full guide to wounds with lymphedema, or see everything Gateway arranges on the mobile wound care in South St. Louis page.

Common questions

Will Medicare or my health plan pay for lymphedema wound care in South St. Louis?

It depends. You can ask us about Medicare, Medicare Advantage, Medicaid and commercial plans. Whether a provider participates, and what your benefits are, depends on the treating provider, your plan and the care the clinician orders. Visits, dressings, compression garments and pumps are often handled under different rules. We go over these questions with you before care starts.

What shoes can I wear over compression wraps?

Wraps add bulk, and many regular shoes will not fit over them. Forcing a foot into a tight shoe can rub the skin or change how the compression sits, and walking in loose slippers raises the risk of a fall. Tell the treating clinician if you cannot get footwear on. Adjustable shoes or other options may be suggested, and the plan can sometimes be changed to make walking safer.

My arm is swollen after breast cancer treatment and the skin has opened. Can Gateway help?

You can ask us about any lymphedema wound, including one on an arm or hand. Arm lymphedema after lymph node surgery or radiation carries the same infection risk as leg lymphedema, and a new opening in the skin should be reported promptly. Let your oncology team know as well. Gateway can arrange an assessment with a partner clinician and share the findings with the clinicians who managed your cancer care.

My aunt lives in an upstairs flat in South St. Louis and rarely goes out. Can she be seen at home?

Yes. Upstairs flats are common in South St. Louis, and visits can be arranged there. Tell us which door and stairway lead to her unit and whether she can let someone in. If she is hard of hearing or does not answer unfamiliar callers, give us a relative’s number too. The treating clinician decides what care she needs after seeing her.

General information to help you talk with your own clinician. It is not medical advice, and the treating clinician makes every clinical decision. For a medical emergency, call 911.