“We all have the same goal”

Communication and coordination are the ideal foundation for successful lymphological treatment. Dr. Hans-Walter Fiedler, Falk Peters and Annette Dunker describe at OTWorld in Leipzig, Germany, how the interaction between physician, provider and patient can work.

Annette Dunker never really sits or stands still. She accentuates her words with vivid gestures, rocks back and forth on her feet and keeps shifting her body weight from one side to the other. A lively, agile woman. On the one hand. But there’s a reason for her exuberance – decongestion exercises: “I’m always moving and even stimulate my muscles when I’m sitting or standing,” explains the licensed specialist trainer in outpatient rehabilitation activity for lymphatic decongestion exercises. Affected herself by lymphedema as a breast cancer patient, this is how she lives her motto: “The more active I am, the better my quality of life.”

Specialists like Dr. Hans-Walter Fiedler couldn’t agree more. As the Senior Physician at the Werl site of Hellweg Vascular Surgery Care Center, he sees edema patients every day. “Many of them already consulted Dr. Google,” the experienced lymph specialist reports, “then, after differential diagnosis, they don’t want to believe that they don’t simply have varicose veins but need lymphological treatment.” By the time Dr. Hans-Walter Fiedler has arrived at his diagnosis, using ultrasound for example, he has thoroughly interviewed his patients, asked them to get undressed so he can palpate the affected areas, compared findings and categorized edema. “Some initially oppose lymphological treatment with compression products,” says the specialist, who then tries to share comprehensive information to convince patients of the value of complex decongestive therapy (CDT). These days in particular, a lot of chronic congestion and many secondary stage II and III lymphedema can be attributed to epidemically increasing obesity. These conditions are hard to decongest if nothing is done to reduce the excessive weight. This requires good patient compliance, says Dr. Hans-Walter Fiedler, whose practice represents a link between patients and outpatient as well as inpatient care. “It’s easier when the lymphedema causes a lot of discomfort.”

Once the patient gets on board, the decision is made what compression level is needed. He usually recommends Ccl 1 or 2, when the patient has never worn compression garments in particular. Nevertheless, he feels that Ccl 3 is not prescribed enough, especially for the lymphological treatment of phlebo-lymphedema with venous leg ulcers. “Sometimes, you just need more pressure for treatment to be successful.” Dr. Hans-Walter Fiedler can reassure colleagues who are inexperienced in prescribing compression garments and who worry about the cost: “All compression classes are refundable and do not impact the physician’s budget. They’re just another medical aid covered by statutory health insurance.” On the prescription, it is important to tick box 7. In addition to the precise diagnosis and possible secondary diagnosis, such as obesity, the prescription must include the type and length or the combination of compression products and an additional prescription sheet. Dr. Fiedler: “Equipped like this, we send our patients off to visit a medical supply retailer. For this, we work together successfully with a wide network of numerous competent medical retail stores.”

The best possible care for a better quality of life

They go to medical retailers like Falk Peters for example. The co-managing director at Enneper medical supply retailer in Iserlohn, Germany, confirms the physician’s explanations: “Edema patients get very frustrated.” He is therefore committed to providing the best possible care to ensure patients regain quality of life, and he continues: “The condition, the edema, should not control a patient’s everyday life. The more unobtrusive we can make the treatment, the more pleasant it is for patients.” Especially when coming into contact with compression products for the first time, in-depth explanations are required to encourage them to patients stick with the treatment, without overwhelming them with information. “We always have to work out how much information a patient can take. For some, it’s better to just move on and leave them alone, others want to hear a lot.”

He has a bit more time as a medical retailer than a physician to identify this need and address it. The measurement process, for example, is a good opportunity to talk to patients, encourage them and explain the entire treatment strategy, which includes decongestion and lymphatic drainage in addition to compression, skin care, possibly donning aids and not least exercise as well as self-management. “Our employees have to be well trained to be able to do all this,” emphasizes Falk Peters. “During further training, they gain specialist knowledge but should also become acquainted with the symptoms and be able to put themselves in the shoes of the patients.” Accompanying diagnoses, such as mental problems, are also important aspects that should be considered. “All in all, it’s about motivating patients to become involved and to keep at it.” However, Dr. Hans-Walter Fiedler also highlights: “Patient compliance is crucial. If patients can’t see progress, they will quickly give up.”

Staying active in compression garments

At the beginning in particular, it can be extremely helpful to talk to others who are affected. This is where Annette Dunker comes in. In addition to her work in rehabilitation exercise, she is the state spokesperson of the lymphology self-help association Lymphselbsthilfe e.V. as well as a speaker for training and further education. She also uses her numerous patient contacts for regular appeals: “If you don’t get involved, it can’t work.” The expert in her mid-50s speaks from experience. In 2007, some of her lymph nodes were removed as part of anti-breast cancer treatment. “Two years later, my body felt as heavy as lead,” Annette Dunker reports. The rehabilitation hospital recommended more exercise – a joke for the active woman who, even as a youngster, passed an exam to be certified as a trainer for recreational sports. In 2009, very few physicians were well versed in the subject. It was not until she visited a specialist edema hospital that she received the diagnosis ‘secondary lymphedema’, which was immediately treated with complex decongestive therapy.

Annette Dunker remembers: “Even though I finally knew what my problem was, I fell into a deep hole.” She found out a lot about the condition and realized that, at home, she was missing one of the five pillars of CDT consisting of manual lymphatic drainage, compression, skin care, education and training for self-management: exercise. “So I took care of that myself.” She trained in outpatient rehabilitation sports for the specialist fields of orthopedics and cancer follow-up care, internal medicine and neurology, and, in 2013, she was awarded the certification for outpatient rehabilitation sport for lymphedema patients by the German Olympic Sports Confederation together with Behinderten- und Rehabilitationssportverband Nordrhein-Westfalen e.V.

Sharing experiences in self-help groups

Usually, around six months pass between the first physician’s visit and signing up to a self-help group. “We first let patients get settled,” Annette Dunker explains. “Then other participants talk about their experiences. We gradually introduce them to the individual components so they don’t get discouraged.” Once patients have understood the principle that lymph can only flow during movement – ideally when wearing compression garments that fit well – most of them are quickly motivated. “Therapeutic exercise not only works in a group setting but also at home,” Annette Dunker emphasizes. Rehabilitative exercise twice a week is not enough in her opinion. As guidance for exercising at home, she recommends Bauerfeind’s curaflow-app, where she was involved in developing the exercises (see information box). The specialist trainer reinforces: only activity and self-initiative will improve quality of life. “With our condition, taking a pill is not enough.”

For vascular specialists like Dr. Hans-Walter Fiedler, patients like Annette Dunker are a real stroke of luck – they and their colleagues make sure that lymph patients have a good network and look after each other in organizations and self-help groups. After all, his influence as a physician on the individual patient’s behavior is limited: “I can’t just say, do some exercise. First of all, it’s often a question of time. Plus, not all exercise is the same.” Patients have to be gradually introduced to therapeutic exercise to prevent losing them along the way. “Everyday life has to be reorganized after patients are diagnosed,” Annette Dunker adds. “But it is possible! But if your mind’s not in it, the body won’t make any progress either.” In self-help groups, people can take their time. Lymphology is like a little family. She would like everyone involved in the treatment to work together even more closely on an equal footing. In the region of South Westphalia, this has been working quite well, as was demonstrated by these three experts at OTWorld. Annette Dunker: “We all have the same goal: providing patients with excellent care.” This is supported by a voluntary network in which physicians and providers from the area share their experiences once a month. If major news, studies or events need to be discussed, a lymphology day will be organized. Or they meet in an extended network that also includes physical therapists, nursing care staff and other groups.

The fashion aspect should not be underestimated

Over time, Annette Dunker has developed additional edema, so she now wears compression garments on her arms, fingers, legs and thorax – preferably with changing colors. “The fashion aspect should not be underestimated,” she explains with a smile. “Colors lower inhibitions, in those we talk to as well. The condition is pushed into the background when you’re talking about the attractive stockings. Our medication isn’t a pill you can take but you can see it on the outside.” Falk Peters also tries to take into account customer requests, such as colors, patterns and much more, especially when it comes to the first product. “In consultation with the physician, we sometimes start with the lower leg, even though a product for the thigh is prescribed.” After all, small steps increase compliance, and it really would not work without consistent care. The treatment never ends but has to be individually adjusted at regular intervals based on equally consistent check-ups by a physician. A disruption in the treatment chain is just as counterproductive when it comes to exercise, explains Annette Dunker.

Most of all, this requires close interaction – and targeted training. All three experts agree about this. “Even in medical school, basic information about lymphology should be mandatory,” Dr. Hans-Walter Fiedler suggests. “The training to become an orthotist includes prosthetics as well as orthopedic and rehabilitation technology. Lymphology is a subject that our employees primarily learn during further education. That should start much earlier,” Falk Peters adds. “In rehabilitation sports, vascular diseases only play a minor part during professional training,” reports Annette Dunker, who is currently the only speaker on the subject. “I’d love to see much more information about lymphology in sports for the disabled.” Then she needs to go because she is demonstrating some lymph decongestion exercises to the audience in Leipzig. And she is very happy to do that: the main thing is staying active.

curaflow: Motivational guidance

The curaflow-app has been designed for women with lymphedema who want to get active. This free tool offers:

• background information about all pillars of complex decongestive therapy (CDT),
• a customized exercise program for every day,
• support during self-management and
• useful motivational tips and expert advice.

The curaflow-app is suitable for all those seeking guidance on their journey to better quality of life. Find out more at: www.bauerfeind.com

Images: Bauerfeind/Andreas Wetzel