What I was speaking about in asking my question was not about what we should not eat, but about what patients should eat once they no longer have diet restrictions. I meant that nephs I have had, as well as dietitians, have had little to nothing to say on correct eating patterns as well as on what type of exercise would be helpful to dialysis patients with the specific issues we have.
When I was first on dialysis many yrs ago, I asked my first neph if the foods I had eaten throughout my life had anything to do with my kidney problem? I meant that we are a junk food generation and even though I consumed healthy foods part of the time, I also consumed junk foods. I was never taught growing up, like most people, what it means to have a fully healthy diet. Even the healthy foods I had were not really healthy, because they were full of preservatives, questionable ingredients/chemicals and insecticides. I had been learning about correct nutrition in the year prior to going on dialysis as I had been feeling sluggish and thought I must be in the middle age slump. As most moms do, I had put everything into raising my children and realized I must take time for myself to put the good health choices back into my life that I had been too busy for, but more then that, to actually research what the truly good health choices are.
I converted one food item at a time into healthy choices, like whole wheat bread for white bread or brown rice for white rice etc. I also had started exercising by walking on a tread mill at a gym and was feeling better physically. It was quite ironic that I was feeling better then I had felt in years and then my kidneys did a nose dive, because it was too late at that point. At that time, I asked my first neph if diet or exercise had anything to do with failed kidneys and he heartily laughed right in my face. It’s one of those moments one never forgets. He insisted that such choices had nothing whatsoever to do with kidney failure.
I have since read a few journal articles which stated that poor eating habits and insufficient exercise certainly can contribute to kidney failure as well as other diseases. One would think this would be a no brainer, but we all are a product of how we were raised and developing good habits is something only a slim minority recognize the importance of. I know I can’t do anything about my failed kidneys, but it has long been very important to me to distinguish what good health habits mean, especially considering that the entire time I was on the renal diet, I was cut off from having many of the truly healthy foods, I fiercely wanted to get on nocturnal txs so I would be free of diet restrictions and could begin to make progress again. Since I had had a taste of what it means to convert to healthy eating choices in the year prior to dialysis, I had never forgotten how great it felt to know I was making correct choices for the first time. I had learned at that time that it is just as easy to make correct choices is it is to make poor nutritional choices.
So, now that I am free of diet restrictions, I have been having a great time getting back on the right road again continuing my education from where I left off yrs. prior. And what I am saying is, it is surprising to me that neither nephs or dietitians I have had focus on healthy eating and exercise in this context. I well understand the problem your groups encounter with patients who are out of control with their food choices in re to diet/fluid restrictions and I can well imagine how frustrating and challenging this is for professionals. But I found that the professionals were out of control, too. By that I mean, neither my nephs or my dietitans seemed to have a concept of what truly healthy nutrition and exercise choices are for themselves, so how could they guide me- they couldn’t.
My nephs never spoke of good nutrition and even my dietitians broke rules of good nutrition, some of both groups being over-weight/out of shape or suggesting foods to me that were not healthy choices. Even though with kidney disease and barely adequate dialysis it was necessary to cut way back on phos. potass. and sodium foods, they were suggesting unhealthy choices to me within the possible choices for an in-center dialysis patient ( i.e. canned syrupy fruits, diet drinks, low fat products, name brands lacking nutritional content and/or preservative etc. laden items that are termed healthy by college training, but not by the true rules of nutrition. And the subject of exercise for one on dialysis never was mentioned. The whole focus was on what not to consume or on food products that were not healthy choices due to their wrong and or/inadequate growing to market composition. Even various junk foods at fast food or other restaurants were given a stamp of approval.
I have long wondered if wrong eating habits and/or inadequate exercise are what contribute to failed kidneys in many cases. Of course there are many who have poor nutritional habits who don’t get kidney disease, but either they don’t have it yet or they are more prone to other health issues. Maybe this is just a mute point, but it seems to me that the wrong emphasis and much wrong info was given to patients in-center that set them up for failure re this subject. This issue is sort of like the problem of kids who are failing their courses in the inner city. But it’s not the kids’ fault, because when an accomplished teacher is brought in who teaches to their learning styles and has a true exuberance, everyone suddenly begins to succeed. Not that it is not necessary for each one to take personal responsibility, but that many are lacking in that regard due to circumstances beyond their control.
In my case, I was the exception to the rule patient who had spot on lab results and fully controlled eating and drinking. Being a pretty good cook, I just viewed the diet restrictions as a challenge to my culinary skills and came up with nice, balanced meals anyway. I didn’t feel that deprived when it came to what I could eat except when the family was having socializing foods and drink like pizza, ice cream, birthday cake, fruit smoothie drinks or coffee, or the fact that it took me longer to figure out what I could order on a menu unlike the rest of my family who could order more quickly. The least comfortable part for me was restraining drinking when I really would of liked to drink a full glass or more of whatever, but even then, I could control what I drank. I’m just saying, I would of liked to of had more support when it came to more creative choices for both nutrition and exercise. Is this fully the patient’s domain or should renal professionals be more educated in these areas so they can better encourage and guide patients?
Even though I wasn’t reprimanded for having poor labs, I always had to get an ear full of what was said to the patients around me, much of which was not very kind and only served to nag, but not offer health changing strategies. To me, true nutrition and exercise are essential subjects that are not addressed by renal professionals with role modeling, encouragement or accuracy. And I wonder how many patients wind up on dialysis, in the first place, because their primary doctors don’t stress preventative lifestyles. Just clarifying here and will put my question to the dietitian as you asked, but I’ve had a 1/2 doz. dietitians to date and none had anything substantial to say thus far.