About wounds with lymphedema

People whose swelling has been present for a long time are the ones most likely to develop a lymphedema wound. That includes people who had lymph nodes removed or treated with radiation for cancer, people with long-standing vein disease in the legs, and people who have had skin infections in the same limb more than once. Severe obesity can overload the lymphatic system. So can spending most of the day seated with the legs down, which is common after a stroke, with advanced arthritis, or with heart and lung conditions that limit walking.

A smaller group is born with lymph vessels that did not form normally, and their swelling may begin in childhood or early adulthood. Older adults often have several of these causes at once.

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.

Arranging this care in the City of St. Louis

In the City of 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.

Almost every kind of housing is found in the City of St. Louis: single-family brick homes, two-family and four-family flats, downtown lofts, high-rise apartments, senior housing towers and large older homes divided into units. It also has many skilled nursing facilities, assisted living residences and rehabilitation centers. Gateway arranges partner clinician visits in all of these. For a high-rise, we ask about the front desk and where to park. For a flat, we ask which bell to ring. We collect those details so the treating clinician can focus on the patient.

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.

In a facility

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.

Changes to report

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

Not all of the fluid in a swollen leg comes from the lymphatic system. Heart failure, kidney disease and liver disease can each add to it, and long-standing swelling from any of them wears on the lymph vessels over time. A primary care clinician keeps track of these conditions through exams, weights and lab work.

That information matters to the wound plan. How firmly a limb can be compressed, and how fast, depends in part on how well the heart can handle fluid moving back into circulation. When Gateway arranges both wound care and primary care, each clinician can see what the other has found and ordered.

Primary care at home in the City of St. Louis →

Getting care arranged in the City of St. Louis

To arrange wound care with lymphedema in the City of St. Louis, call Gateway at 314-325-0126. Patients, family members and caregivers can call directly, and a referral is not required. We will ask where the patient lives, what has been done for the wound so far and which clinicians are involved. Gateway then confirms whether a partner clinician is available for that address and care setting, requests the relevant records and schedules the visit. At that visit the treating clinician examines the wound and decides on the plan. Our job from then on is the coordination: orders, supplies, follow-up visits and keeping the care team informed.

Barnes-Jewish Hospital, beside Forest Park, and SSM Health Saint Louis University Hospital, on Grand Boulevard, are the two major hospitals in the City of St. Louis. Gateway is not affiliated with either. Both discharge patients to every part of the city, and some go home with wounds that need regular attention. Case managers and social workers can refer by phone at 314-325-0126 or by fax at 314-786-7966. Families can call directly. Once we have the discharge summary and orders, we look for a partner clinician for the patient’s neighborhood and report back.

  • County: City of St. Louis, Missouri (an independent city)
  • ZIP codes: 63101, 63103, 63104, 63106, 63108, 63109, 63110, 63111, 63112, 63113, 63115, 63116, 63118, 63139, 63147
  • Nearby hospitals: Barnes-Jewish Hospital; SSM Health Saint Louis University Hospital (not affiliated with Gateway)
  • Nearby communities: Downtown St. Louis, Central West End, North St. Louis, South St. Louis, Clayton and Central County
  • Care settings: Private homes, skilled nursing, assisted living, memory care and rehabilitation

Related care in the City of St. Louis

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

Common questions

Do I need a referral to request lymphedema wound care in the City of St. Louis?

No. Patients, family members and caregivers can call Gateway directly at 314-325-0126 or send a callback request, with or without a referral. Some health plans have their own referral or authorization rules, and we ask about those when we confirm the treating provider. The web form asks only for a name and phone number, so please save medical details for the phone call.

Should I rest with my leg raised or try to keep moving?

Usually both have a place. Raising the limb while resting lets gravity help fluid drain, and walking or moving the ankles works the muscles that push lymph along. Long hours sitting still with the feet on the floor tend to make swelling worse. The right balance depends on your heart, your steadiness on your feet and your wound, so ask the treating clinician what is safe for you.

Will Medicare or my health plan pay for lymphedema wound care in the City of 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.

I live in a high-rise apartment building in the City of St. Louis. How do home visits work there?

Much the same as in a house. Give us the building address, your unit number, how visitors check in and where they can park or be dropped off. If the front desk needs advance notice of a visitor, tell us. The partner clinician comes to your apartment, and afterward Gateway coordinates any supplies, orders or follow-up visits the treating clinician decides on.

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.