Sports with a transplant

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Good-natured Karin Alders-van den Hunk (35) has had a lung condition her entire life. Doctors are not sure what exactly is wrong with her. When she was five, her lung capacity was at only 50 percent. Nevertheless, she keeps up with her contemporaries: as a teenager she makes the sixteen kilometre trip to school twice a day on her bicycle, she works out three times a week, and she goes out every weekend. ‘I felt more tired than most of my friends, but I just didn’t give it a second thought’, she says. She keeps up this attitude as a grown-up, going to work at a hospital and having two children. Outside her work, she is dependent on an oxygen tank. She still works out, and leaves the oxygen tank at home when she does.

However, when she ends up in the intensive care unit (ICU) with a viral infection in January of 2015, her health begins to steadily decline. She becomes a regular at the ICU and is increasingly dependent on other people. Her lungs’ condition worsens, and eventually she is forced to quit her job. After having been on the transplant list for a year, she gets a new lung in October, 2016. It is a major surgical procedure, but it is her only chance for a relatively normal life.

Crash course

Alders-van den Hurk is one of fifty patients who have been given a new lung, kidney, or liver, who are participating in a ‘lifestyle’ crash course at rehabilitation centre Beatrixoord. The UMCG hopes to use this course, which lasts a week, to improve aftercare for patients in the future.

‘It’s a very intense experience for the patients, but it teaches them that they can handle it’, says physical therapist and researcher Sanne van den Berg, who supervises the patients during the crash course. In addition to no less than fifteen hours of working out, the patients are taught about a healthy diet, they talk to a psychologist, and they have the opportunity to share their stories with each other. After a week, they are sent home with a concrete and full aftercare plan.

Transplant aftercare is in need of improvement, because many people are scared to start working out again after receiving a transplant. Both patients and physical therapists are lacking in knowledge of what they should, may, and especially can do. As a precaution, they usually end up taking it easy. It turns out, however, that working out is actually essential for transplant patients. ‘They can do more than they think’, says Van den Berg. ‘That is what we’re trying to do here, to give them that experience, and also teach them a specific training schedule.’

Kilimanjaro

Another reason is that after those first six months after a transplant, their improvement comes to a standstill. During the first six months patients steadily improve, but after that, they stagnate, in spite of their now properly functioning organs. Moreover, the patients do not work out enough, movement scientist and physical therapist Edwin van Aldrichem concluded in his PhD research about the relationship between physical activity and the quality of life of people who received a transplant organ.

According to him, a healthy diet and sufficient physical activity will ensure that after a transplant, these people can have the same lifestyle as healthy people. To prove that a transplant organ should not hold anyone back, he climbed the Kilimanjaro with twelve transplant patients in 2014. While they were climbing the second highest mountain in Africa, Van Aldrichem studied the patients’ physical response to the strenuous activity, and found no difference between theirs and the response of healthy people.

The climb is illustrative of the current state of transplant medicine, says Van Aldrichem. ‘Many of the patients are still young. They want to travel and climb the Kilimanjaro’, he says. A transplant is no longer just a means of survival; transplant patients want to improve their quality of life as well.

Health insurance

Asked if her quality of life has improved, Alders-van den Hurk does not even hesitate: ‘I’m amazed by what I can do. Being pregnant right now would be easier than the other two’, she says, joking. The week in Beatrixoord has opened her eyes. ‘At home I was having trouble figuring out how far I could go, even though I knew I could do more.’ She felt as though her physical therapist was actually holding her back. After the crash course, she knows she is capable of more than she ever thought possible. It is something she clearly takes a lot of pleasure in: ‘The sky is the limit.’

The researchers hope their crash course will become a standard part of the aftercare programme covered by health insurance, but that is a long way away. Alders-van den Hurk emphasises once again how much the week has meant for her, and how important this programme is to transplant patients. If the pilot results confirm her personal experience, that would be a step in the right direction.

It has been an informative, fun, but also difficult week. She does not think she will be able to manage working out fifteen hours a week when she is back home. She has mouths to feed, a company to run, and she wants to go back to school. But she does plan to work out for an hour every morning. She would like to write her donor’s family a letter. ‘Every day I am reminded of how much life I have to live and how much I’m able to do again. The difference between my old lungs and my new lungs is enormous. I never dreamed I could feel this way again.’

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