medi GmbH & Co. KG
Bayreuth (ots)
After a car accident in October 1990, Marianne Heitkamp developed lymphoedema for the first time: initially only on both legs, later also on the arms. Since then, the 64-year-old has relied on a therapy mix of manual lymphatic drainage, lots of exercise and compression. For decongestion she wears the medical adaptive compression system circaid juxtafit and in the maintenance phase the flat-knit medical compression stocking mediven 550 (both from medi). In an interview with her physiotherapist Tina Keienburg, she explains why the interaction between patient and therapist is crucial to success – and why it took almost a year to diagnose “lymphedema”.
Ms. Heitkamp, you have primary lymphedema – when was the diagnosis first made?
“That was in August 1991, almost a year after my car accident: An elderly gentleman drove his vehicle into my stationary car and when I was thrown out I got caught on the driver’s door with my right foot. Among other things, the lymphatic system was severely damaged Slight swelling was visible in my left leg. My lymph vessels are weaker than they are in healthy people anyway, as I have a hereditary predisposition. My mother and aunt used to have severely swollen legs, but neither of them got the disease was diagnosed. This congenital weakness of my lymphatic system, the primary lymphedema, only came to light with me as a result of the accident. I also have secondary lymphedema on my right leg, as the lymphatic vessels were injured here. After my wounds had healed, the lymph fluid could flow here can no longer be transported away in sufficient quantities.”
Why did it take almost a year to get your diagnosis?
“Back then there were only a few specialists and family doctors didn’t know enough about the disease. I was examined by several doctors, but nobody could make a specific diagnosis – the advice ranged from losing weight to zinc paste bandages to Lasix tablets to treat the To promote water excretion. Nothing helped in the medium term. By chance, an acquaintance asked me about my swollen legs – she also had lymphedema and had good experiences with the treatment in the Földiklinik, a specialist clinic for lymphology. I then asked my family doctor to to refer me there. In a comprehensive clinical examination, Dr. Földi determined that I was suffering from congenital primary lymphedema – the diagnosis was confirmed again at the St. Elisabeth Hospital in Bochum.”
What was the treatment like in the clinic?
“During my first four-week stay, my lower legs were treated with manual lymphatic drainage every morning and evening and then bandaged with bandages. In addition, a lot of sports in the compression and I received reduction diet – the measures worked! My leg circumference reduced and I lost weight. At first I thought Me: ‘Great! I’ll do that for four weeks now and then my lymphoedema will be gone.’ I didn’t realize that I had a chronic illness that would be with me for the rest of my life.”
How has your lymphedema been treated since then?
“I was in the clinic every year for inpatient decongestion, initially in the Földi Clinic, later with Dr. Schingale in the Lympho Opt Clinic. During my second stay, the lymphedema had already spread from my lower legs to the thighs and a year later they were too both my arms were affected. Since then I have been 27 times for inpatient decongestion and four times as an outpatient due to the corona pandemic. After the treatments I am almost always pain-free and more mobile. However, the rest of the time it is up to me to actively influence my illness and to shape everyday life in a self-determined manner. This requires a high degree of personal initiative and knowledge about the disease. A good network of therapists and doctors is also important.”
Was it difficult to get expert care?
“When I was diagnosed almost 32 years ago, the disease was even less well known here in North Rhine-Westphalia than in the rest of Germany. Even my family doctor at the time knew little about it. I was very lucky that Dr. Schingale saw me during of my stay in the clinic and was always available to give advice to my general practitioner. It took me a long time to find a physiotherapist who was trained accordingly – today I am being treated by Tina Keienburg in Rheine and I am extremely satisfied.”
What is important to you when choosing a suitable physiotherapy practice beyond the technical aspects?
“The chemistry has to be right! After all, you go for lymphatic drainage twice a week and have to undress in front of a stranger. That’s a struggle at first, especially if you’re not completely satisfied with your figure. It’s also important that the therapist Takes time to answer questions, but also recognizes when, for example, the lymph nodes in the neck and head area are swollen – and treats them separately.”
Dear Ms. Keienburg, you have been Marianne Heitkamp’s physiotherapist since 2019 – in your experience, what are the central therapy components for lymphedema patients?
“The most important components for those affected are their own motivation, willpower and awareness of the disease. Without discipline and cooperation, the best therapy and most effective medical compression are useless. We as physiotherapists have an advisory function that goes beyond pure manual lymphatic drainage. We clarify , give tips on skin care or behavior in everyday life and support the patients in the social-emotional area, for example if they are having a bad day. Our work is more comprehensive than you think.”
Dear Mrs. Heitkamp, how much time does your therapy take up in everyday life?
“Twice a week I go for manual lymphatic drainage for 75 minutes each and just as often I do strength-endurance training for one hour each with other patients. In addition, I go for at least 40 minutes of walking or do long walks and yoga, and I cycle regularly and do a lot of gardening or household work – always with medical compression garments. I’ve been wearing flat-knit medical compression stockings for over 30 years. Without my mediven 550 compression garments for arms and legs from medi, I wouldn’t be able to perform as well for a long time.”
What do you particularly like about the mediven 550?
“The knitted fabric is strong and stable, but comfortable to wear. I particularly like the individual additions such as the hallux relief zone or the integrated functional zones for even more wearing comfort. Here, good advice from a specialist in the medical supply store is worth its weight in gold! And I also personally really like the crystal motifs. It’s important to feel comfortable and attractive in the compression.”
Since last year you have been using the medical adaptive compression system circaid juxtafit on your arms and legs for decongestion – what was your first impression?
“To be honest, I was a bit skeptical. I couldn’t imagine that the pressure would be applied as selectively as necessary. But my physiotherapist Tina Keienburg and I have been taught better! circaid saves more time than conventional wrap bandages and does not slip during the day. Because of her experience, my therapist naturally finds it easier to put on the circaid on me. However, good instruction from a specialist in the medical supply store is essential here – after that, putting on the circaid only requires a little practice and skill.”
Dear Mrs. Keienburg, can you confirm that?
“Yes, definitely! Wrapping can be a burden for therapists and patients alike. It took us at least an hour to wrap both legs at Marianne Heitkamp plus the arms. Not to forget: the patient has to remove the bandages every evening and laboriously roll it up again. After two weeks we were at 20 minutes with all the approximately parts on arms and legs. The result was impressive: Mrs. Heitkamp lost almost four kilos in weight within 14 days and her circumference was reduced by up to 2 cm It is an overall very well thought-out system and the optimal alternative in decongestion therapy.”
Were there any other positive effects, Ms. Heitkamp?
“circaid is incredibly light and comfortable to wear – I can put it on under normal clothing and it’s not noticeable. I’m much more flexible than when I’m wearing wrap bandages and can do sports with it effortlessly. Nothing slips or constricts. It works also had a positive effect on my psyche. And with the unique pressure measurement card, I can check directly whether the compression pressure is right – and readjust the bands if necessary. One evening I completely forgot to lose weight circaid and only noticed it when I was about to go to bed .”
Since 2008 you have been the 1st chairperson of the lymphatic self-help North-Münsterland – how much does the exchange help those affected?
“It is very difficult at first to deal with the diagnosis – you have the feeling that everyone is staring at you because of your appearance. It helps a lot to talk to other people who are affected and to deal with the disease in a protected environment! We provide information on this, operate Education and establishing contacts. Joint activities such as lymph yoga or workshops on the subject of sport, nutrition and medical compression also strengthen self-confidence and convey a sense of belonging. Nobody is alone with their illness. We do not let setbacks discourage us, but instead enjoy ourselves strengthened and with increasing self-confidence our life!”
Dear Ms. Heitkamp, dear Ms. Keienburg, thank you very much for your open words and the exchange on this important topic!
Surf tips:
Purpose:
circaid® leg garments: The compression garment is used to compress the leg of patients with venous and lymphatic diseases.
circaid® foot options: The compression garment is used to compress the foot and ankle in patients with venous and lymphatic disorders.
circaid® juxtafit® essentials arm: The compression garment is used to compress the arm of patients with venous and lymphatic diseases.
circaid® juxtafit® essentials hand piece: The compression fitting is used for hand compression in patients with vein and lymph disorders.
mediven® 550 leg: flat-knit medical compression garment for compression of the lower extremities, mainly in the treatment of diseases of the lymphatic system.
mediven® 550 arm: flat-knit medical compression garment for compression of the upper extremities, mainly in the treatment of diseases of the lymphatic system.
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Janine Lenhart
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