Rieky van Elk - Living with lymphoedema

Patients themselves play an active role in their treatment

If you have oedema, you need compression – that is the message from the lymphoedema patient Rieky van Elk, who uses mediven compression armsleeves and circaid adjustable compression devices to treat her disease.

Rieky van Elk from the Netherlands developed lymphoedema in her right arm after two episodes of breast cancer. She now has the lymphoedema under control – mainly thanks to the compression garments that she wears day and night. In the medi healthcare interview, the 62-year-old explains why it was so difficult to start treatment for the lymphoedema and why it is so important that patients themselves play an active role in their treatment, read up on the subject and treat their bodies with care.

Interview with Rieky van Elk

Mrs van Elk, what is your medical history?

“I was first diagnosed with breast cancer in 2004, when I had a partial mastectomy. I had another partial mastectomy in 2009, when lymph nodes were also removed. Then I started chemotherapy. I noticed the change between the fifth and sixth session: I was standing in front of the mirror and saw that my right elbow was thick and swollen.”

What was your first reaction?

“Sadly cancer is widespread in our family. My father died of pancreatic cancer as early as 1969. My mother and my sister both have two episodes of breast cancer behind them, after which my sister also developed lymphoedema in her right arm. So I was not surprised to get cancer, but it was still very difficult for me and my family to come to terms with this diagnosis.”

Which treatment did your doctor choose for you?

“My doctor did not mention any specific form of treatment. I was given a list of potential therapists, but they all had long waiting lists for new patients. They also told me that treatment could only start after chemotherapy and that I should wait six weeks. It later transpired that this information was incorrect and that I should have started the treatment immediately. I asked my sister for advice and she gave me bandages, so I could start treating myself right away – luckily, as a nurse, I already had the necessary skills and I could apply the bandages myself.”

What were your first experiences with compression garments?

“I said to myself: you need it, you just have to do it. Once I met a woman with a very thick arm oedema, twice the size of her normal arm. When I saw that, I knew that I never wanted to have such pronounced oedema. At first, I wore a flat knit arm garment and a glove without fingers. My sister had been wearing flat knit garments for many years, so I already knew that if you have oedema, you will need compression.”

In which phase, and how did you hear about circaid products?

“Some months later, I went to our Dutch oedema patient organisation and met Els Brouwer. I also went to congresses in the Netherlands and to the International Lymphoedema Framework in Washington, where I saw many products. I finally became acquainted with the circaid products at the medi Masterclass in the Netherlands.”

You wear a circaid juxtafit arm*, an adjustable compression device. How do you like the product and how do you use it?

“During the day, I wear a mediven 550 A-E (glove) class III and C-G (arm) class III garment. These flat knit garments are most useful during the day and they control my oedema, but I want something else for the evening and night. That is why I love to wear the soft circaid juxtafit arm* aid in the evening, because it offers great wearing comfort. This way, I am wearing compression for my arm and hand 24 hours a day.”

How do you find being able to readjust the compression device yourself, and how do you rate the product in terms of self-management?

“I love the circaid product, because my arm needs the change from flat knit garments to an adjustable compression device in the evening. I also use the circaid Built-in-Pressure system card to control and set the right pressure.”

How do people around you react to the compression device?

“I have now been wearing compression for eight years. Most of the time I wear the beautiful medi colours to coordinate with the colour of my outfit and I get a lot of positive feedback from the people around me. Sometimes children ask me: what is that you are wearing? And then I tell them: I have a disease that made my hand thick; this garment helps it to stay thin!”

Are you active in a self-help group?

“Yes, I am an active member of a lymphoedema patient organisation, the NLNet Dutch Network Lymphoedema and Lipoedema. I answer the various questions that patients pose. Sometimes they are looking for a good therapist in their neighbourhood or they want information about garments or health insurance or on how to get financial support for their compression therapy.”

How do you obtain information about your illness and treatment options?

“I am a nurse, so I have medical knowledge. I also read a lot about it, exchange experiences with my sister and attend congresses to learn about new treatment options.”

What do you do besides the compression therapy to control the illness and keep fit?

“I do a lot of exercise to make me feel good: breathing, yoga, walking and swimming. I also try to eat healthy food and keep my weight down – and, of course, I wear my compression garments every day! Physical exercise while you are wearing compression garments is the best way to treat the oedema. And the higher your BMI, the thicker your oedema will be.”