Living with lymphedema: A patient’s perspective
Lymphedema can significantly impact your quality of life in ways big and small. Whether swelling in your arm restricts your ability to lift objects, or swollen ankles prevent you from wearing a favorite pair of shoes, lymphedema can be painful, emotionally and physically.
Karin Nowatzke, a breast cancer survivor at our Illinois hospital, says living with and managing lymphedema became an obstacle she didn’t expect after undergoing a mastectomy and other surgical procedures to remove cancer in her breast. After cancer treatment, which included the removal of several lymph nodes, Nowatzke turned to compression garments and physical therapy to cope with the lymphedema that developed in her arm. Her condition “would get a little better, but it was gradually getting worse,” she says in this video. Daily tasks such as typing became uncomfortable. Nowatzke tried a compression glove, a sleeve, then a pump, but was unable to find lasting relief. “I tried physical therapy, but it provided only a short-term benefit,” she says. “Lymphedema affected me personally. I couldn’t do dishes. Trying to make a bed was hard for me. Folding clothes was almost impossible.”
After a year and a half of frustrating functional limitations, Nowatzke chose to undergo a microsurgical procedure called a vascularized lymph node transfer. Her surgical team included Dr. Aaron Pelletier and Dr. Daniel Liu, both Plastic and Reconstructive Surgeons at our hospital outside Chicago. The surgeons performed the lymph node transfer at the same time as her breast reconstruction, reducing her time in the operating room. Dr. Liu calls lymph node transfer a delicate procedure, saying he “always operates with another fully-trained microsurgeon. Not only does this decrease the operating time and stress on the patient, but it also combines the experience of two microsurgeons, providing a number of benefits for the patients we treat.”
The first benefit Nowatzke noticed after her surgery was a renewed ability to grip, “fully grip,” she says. “That hadn’t happened in a year and a half.” With the swelling in her arm diminished, she says much of the pain subsided. “I feel much more confident and comfortable,” Nowatzke says. She is able to wear blazers at work again, and she can sit through staff meetings with fewer discomforts. Dr. Liu says advances in microsurgery have opened up more options for patients who do not respond adequately to other therapeutic interventions. “There are a huge number of patients who have been living with lymphedema, and they don’t know surgery may be an option for them,” he says.
Standard lymphedema treatments may include skin care, manual lymph drainage, massage and exercise to help stimulate the lymphatic system. Lymphedema patients are also urged to take these additional steps to reduce symptoms:
- Avoid extreme temperatures.
- Protect the affected area from injury or irritation like an insect bite or sunburn.
- Check all swollen areas for signs of infection.
- Wear loose-fitting clothing and jewelry.
- Support the affected limb and elevate it above the heart as much as possible.
- Take doctor-prescribed medications to help reduce inflammation, prevent blood clots and alleviate pain.
You may also want to connect with a Certified Lymphedema Therapist in your area. Early diagnosis and treatment are important in managing lymphedema, so talk to your physician promptly if you experience any symptoms. Nowatzke’s advice to other patients facing lymphedema? “Anybody living with this condition should talk with their doctor to see if surgical treatment may be an option for them,” she says. “There is light at the end of the tunnel."
Learn more about how to manage lymphedema.
No case is typical. You should not expect to experience these results.