Four categories came forward in the analytic process of the interviews. Restrictions and exhaustion - describing how the patients handle strict dietary restrictions and how they muddle through the exhaustion both obesity and a kidney disease can bring along. Hope and hopelessness - patients trying to lose weight feel a deep sense of hopelessness. Most of the time they are on the brink of giving up, yet, in the middle of the hopelessness, they discover new hope and renewed energy to push on. Support and self-discipline - how patients in their weight-loss battle want support from the hospital, general practitioner and local community, along with family and friends, but how they also discover that they are the only ones responsible to make a change. The last category motivation based on severity, describes how patients that need to lose weight to get on the transplant list, tend to put off weight-loss until their condition is so dire that they essentially are forced to do something about it.
Restrictions and exhaustion
In this category patients described struggling with the dietary restrictions kidney disease brings, while also having to lose weight. Several patients expressed frustrations about the restricted diet: One patient said: “it’s extremely hard to lose weight when you have to be careful all the time and think about how much potassium and phosphate is in the different foods.” Another interviewee said: “I have tried to eat reasonably, but I find it difficult since there are so many things I can’t eat”. A patient who also has diabetes together with her kidney disease said: “One thing is to have this diabetes, and I used to be allowed to eat fresh vegetables. But then when I got my kidney disease, I found it very difficult that I couldn’t eat that anymore.” Another one said: “I feel like many of the things I need to eat in relation to my kidney disease, are the same things, they say, don’t work on a diet, such as white bread, which you would normally avoid if you’re on a diet.”
The patients in this study described an extreme level of exhaustion. Many expressed that the energy simply isn’t there to get out and exercise, one says: “I was so tired after getting off work, that I had to go home and sleep for an hour before I could go and do sports”. Another one expressed how he wished to have more energy. One believed that his obesity is the main reason for his tiredness: “you get extremely hindered from particularly extreme obesity, you’re constantly tired, and adding a kidney disease and dialysis on top of that doesn’t help at all”, he goes on to say: “I can remember being mentally tired all the way back from when I was a kid.” Several also expressed that they would like to exercise more, but it’s difficult when the dialysis treatment is 3 days per week, and perhaps together with a job.
One patient said: “I need to find a way to deal with the exhaustion, that’s something I need to find a rhythm in before I can add exercise to my schedule.”
Hope and hopelessness
Patients described their weight-loss endeavors with an all-encompassing hopelessness. Words expressing their feelings of having to lose weight included: impossible, battle, and that it simply wasn’t going to happen. One patient’s experiences with weight-loss were: “they told me to lose 10 kg, and my initial reaction was that I couldn’t, and that it wasn’t going to happen.” Another one expressed how he found it basically impossible to lose weight: “When you have to lose more than 20 kg you might as well give up right away. It’s not realistic, and not something you just do in 6 months... I find it entirely impossible.” Several patients expressed how weight-loss is something you need extra time and “room” for in life, they explained how they had too much going on currently, to take on the weight-loss battle, and also expressed that when life would settle down a bit, they would have the time to get serious about weight loss. One patient said: “when I first was told how much weight I needed to lose, it just knocked me completely out” yet goes on to say: “I have actually already lost 12 kg, so I’m counting on that I can get on the list pretty soon.” One patient was particularly frustrated with her own inabilities to lose weight: “I’m so annoyed that I can’t just do it, I think to myself - why don’t you just do it?!”
Support and self-discipline
Support from the hospital, general practitioner and the surrounding community along with close friends and family members was something the patients thought about a lot, but also how losing weight and generally taking care of yourself was entirely your own responsibility, and how no one can do the job for you. One described how he thought the doctors and his family focused on the weight too much, and felt like it took focus away from what was important, his kidney disease. He also described how he felt he had gotten a lot of support from the hospital where he had talked to a dietitian, but that he himself, was not very good at following the advice he was given. Another one said: “I see a dietitian regularly, but honestly it’s your own responsibility do to something about it.” One described how she on her own found weight-loss support, but also expressed that you are on your own trying to figure it out. Another patient described how his wife was very supportive when he wanted to go away on a 3-month weight-loss stay. He went on to explain that he had not received any support from the hospital or the local community, he said: “I was extremely frustrated when there was no help to get, but then I said, OK, only you can do something about this.” One discussed how the advice he got from a dietitian was good, but that “it was basically the same old song; it’s easy to say what to do, but very hard to follow”. Several expressed how they would like a group or a partner to meet with and exercise, someone to set goals with that will keep you motivated. One said: “I want someone to keep an eye on me, someone I meet with, so that if I show up and haven’t lost weight, that I would be embarrassed.” Another one said: “I would like to meet with someone and exercise. If I have to go to the gym alone, I just won’t get it done.” Several expressed that the advice and diet plan they got from the dietitian didn’t suit them very well, and that it often suggested meals that they would never eat. One patient who was included in this study had already managed to lose sufficient weight to get on the transplant list, when asking him what it took, he only had one answer; “self-discipline and nothing else”.
Motivation based on severity
A general experience in this category was that many of the patients did not feel much urgency to lose weight, because their illness was not serious enough yet. They all expressed though, that as soon as they got to be in very bad shape, then they would be able to lose sufficient weight. Others had also discovered, that losing weight was their only way, simply because they were so hindered in everyday life, that they could not function at all. One patient described that he did not feel ill enough, and that this was the reason he was not motivated to lose weight yet. One described that when she was told to lose weight, it completely flattened her, but she also said: “I’ve been thinking lately, that if I’m going to get a transplant at all, I’ll have to get on the weight-loss very soon.” One patient explained how she knew she could keep her illness at bay, at least for a while, if she would eat healthy and exercise, but that dialysis was inevitable and transplant after that. One patient described how he was so overweight that he could not do anything at all, and that is what eventually ended up motivating him to lose weight, he said: “it wasn’t until I started in dialysis that it became serious to me, when you suddenly can’t do anything at all, it’s time to get in gear.”