Nutrition and exercise

Now that I am feeling so improved with nocturnal txs, I have a burning desire to put the balance back into my life with nutrition and exercise. It is a joy to no longer have to be on the renal diet. I have gradually introduced the truly good natural, organic foods. I have read that good nutrition also means eating 5-6 smaller meals throughout the day as opposed to the 3 meals a day with the heavy final meal that most are used to having. I find it very difficult to do this as I guess the old eating pattern is deeply ingrained. Also, the more I eat throughout the day, although very small portions, the more unwell I begin to feel.

It has been my pattern to have a normal breakfast, but then I eat very little throughout the day as I get a feeling of fullness which makes me feel sluggish. So other than a little fresh fruit or veggies or a very small portion of a meal with protein, I don’t eat or drink much until the final meal. By that time, I have a good appetite and eat a normal sized meal like most do. I am working hard on adjusting this, but don’t have any ideas yet.

I also am very limited in the amount of fluid I can take in and drink next to nothing all day as fluid also makes me feel unwell. I like to save my fluid intake of only about a cup or less for the final meal of the day. I actually have next to no thirst all day long only sipping a little water here and there. I am wondering how it is even possible for a dialysis patient to have good nutrition when fluid intake must be so minimal.

Each of the nephs I have had know very little about nutrition and exercise. I have read the stories of a few dialysis patients who manage very well in these depts.- several are body builders. I avoid that type exercise as it doesn’t seem that my bones can take it. Of course, maybe that’s exactly what I need, but I gravitate more to non-weight bearing exercise like water aerobics. I feel both a nephrologist and a renal dietitian should have a perspective on this subject, so I am beginning here. Just wondering if there are specific ways you know of that dialysis patients can get around their limitations and become fit.

Eating patterns in dialysis

Jane, though you are right and both renal dieticians and nephrologists should (and, I believe, do) have an understanding of dietary issues in dialysis patients, it is an area I generally leave to our dietician team to discuss. After all, it is the reason why we have a trained renal dietician attached to our service. There is, I believe, a dietician as an advisor at the HDC site (LeeAnn Smith) and maybe this is a question better directed to her.

In brief, most (if not all) of our patients on longer and more frequent dialysis regimens eat and drink as they wish. We do not routinely limits fluids in our frequent 5+ night/week nocturnal dialysis patients (except if there is to be a one or more night gap in their dialysis schedule) … or if they are going to a special event where ‘excesses’ are human nature and thus some additional restraint or understanding of their circumstance is common sense … and even then, it is cautionary, rather than proscriptive. We do not find this an issue for most of our nocturnal patients. Indeed, as has been often discussed here, fluid freedom is one of the greatest benefits of home-based, long hour, more frequent dialysis programs.

I think you underestimate the understanding (at least I hope you do) of nephrologists. However, though mindful of good eating habits, it is my experience that most patients take little or no notice of dietary advice – at least in a sustained manner – and it is one of the most difficult and challenging of the areas we cover.

It is easy - and sometimes irresistible - to just give up trying to influence long-ingrained eating and drinking patterns. We would, in a perfect world, like everyone to be an ideal body weight. Are they? No. Look about you. Obesity is rife - everywhere - and not the least in our two countries! This - despite an avalanche of publicity, diet books, exhortation by physicians, the media - so many sources.

Some dialysis patients … and I know Nancy Spaeth (see one of the early webinars) is hot to trot on this topic … are faithful to dietary advice: maybe sadly, but in truth, most are not.

I am afraid I have no logical explanations for the individual peculiarities of your observed dietary issues – though perhaps LeeAnn may have. I would suggest you discuss this topic with our dietary guru, LeeAnn Smith. Dori has appointed her to this panel just for this purpose. Send her this question.

John Agar

Like many things in dialysis , the issue of diet, exercise and other survival strategies is in the province of the patient much more so than the nephrologist. Salt, Potassium and Phosphorus are the biggest issues that you truly must take charge of in your own life if you wish to have the survival advantage. Who is responsible for what a dialysis person eats, the patient himself in almost all circumstances. Learning to eat to survive is a challenge but a must do to stay healthy. I remember talking to one of my patients who survived as an insulin dependent diabetic beyond 50 years. I asked him about the frequent finger sticks that he did sometimes 8 times a day. He had a great answer. He looked around at some of the other diabetic patients he knew who were dropping dead left and right. He made up his mind that he wanted to be a survivor and the frequent finger sticks were a minor nuisance to him ever since. I look at diet for dialysis in the same manner. What is your survivor quotient? I have learned to appreciate a taste of this or a taste of that to satisfy any cravings, but feeling well because I avoided some of those foods is much better than feeling miserable because of eating a food I knew in advance I should avoid or strictly limit it. Diet is our responsibility, not the docs or the dietician who are there as a resource to help us make good choices. The responsibility is ours alone.

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.

Dr. Laird,
As I was saying in my previous post, I had a good survivor quotient. I also figured out the tips you described in your post. I recall reading one of your posts at DSEN where you said your phos. results were nicely controlled and without binders. Was this doing 3 x dialysis or 6x SDD at 4 hrs per tx.? When I did 3x dialysis, my phos went right to the limit and with 4 binders a meal. I never went over, but even with taking in much less phos foods then I did prior to dialysis, I was in the 5 - 5.5 range. With SDD 6x at 2.5 hrs, I still had to take 4 binders a meal although I was then eating more phos foods and phos results were lower. If I had been doing 4 hr txs 6x, that might of been the point where binders were no longer needed. With 7 hr txs now, phos averages 3.0 and binders are history. So, longer more frequent dialysis helps us out unless you were a vegetarian.

Dear Jane, my comments on the survivor index so called were not directed at any individual, just and example of something that I keep in mind when I don’t like some of the things that I have to do to do well on dialysis such as diet.

As far as the PO4 issue, I have never taken any binders and I have known exactly what I can and cannot eat as far as PO4 goes while on incenter 4 hours 3X a week or 4 hours 5X a week with NxStage. I exercise and still have a fairly large muscle mass which is one of the key users of PO4 in the body which I believe is part of the equation but I can’t point you to a directed articel on that issue, just my own theory of PO4 for myself. The more you use, the lower your levels, makes sense to me, but I don’t know of any papers stating that outright.

In addition, I keep my PTH levels at almost exactly 150 as much as possible. When I was up in Idaho for the winter with very little sun, my PTH went over 350 and my PO4 was up in the 4.5 range, which is higher than I like to keep it. Vitamin D and its replacement is very important however many nephs are satisfied as long as it isn’t over 500 or more. I believe that we should optimize this as everything as in dialysis so I increased my zemplar on my own but it didn’t really come down again until I started to get more sunshine here in CA. Very important but over looked issue.

In addition, the preservative factor is very real and bothersome to me because that is the one issue that limits my diet more than anything else. PO4 is time dependent in its removal and that is why you do well with the nocturnal dialysis. Many on NxStage short daily have increased PO4 binder usage. I noted that myself and increased my NxStage dose by a factor of 2 from 20 L to 40 L and found it is not only time dependent but dose dependent with NxStage, something not discussed anywhere in the literature at this time.

Dietary source is important as well since vegetarian foods with high PO4 seem to not get elevated levels as quickly as the elemental PO4 does in Pepsi or Coke for instance. Dialysis diet is important and I find it easy to do, but not easy to want to do. Back to the survival index.

Jane, to the extent that diet contributes to diabetes and/or high blood pressure–the two leading causes of kidney failure in the U.S.–it absolutely plays a role in kidney failure. Obesity and a high sodium diet loaded with trans fats, high fructose corn syrup, too many starches, and lots of preservatives/hormones/antibiotics helps drive both of those very common health problems. You didn’t say what caused your kidneys to fail. If it was something like FSGS or a kinked ureter, then diet probably did not play a role.

Hi Dori,
I was never told the cause of my kidney disease. Saw docs for annual physicals and the words kidney disease were never spoken to me. Found out I had borderline high blood pressure at a health fair, but at the time didn’t even know what that meant. This was another question I asked my first neph and he told me this had nothing to do with my kidney issue as my bp was not that high. It seems I fell through the cracks of the medical establishment. My first neph opted not to do a biopsy as he said it was too late for that since my kidneys were totally scarred.

Recently, an immediate family member was diagnosed with Igan. I strongly wondered if there was a connection. He also has gout, diabetes and heart issues which I do not have. In looking into this, I came up with zero as it is supposedly rare that 2 members of the same family have it. No one in the family until me has ever had kidney disease or been on dialysis. It is possible for more than one member of a family to have Igan, but no way to check it out now. I asked in an Igan group if there is any connection to diet or exercise and they seem to think none. But when I asked them if anyone having yrs to go before dialysis had ever tried to eat and exercise correctly, they were clueless about what that really means. So, I wondered at that point if Igan is really a mystery disease with no known cause or if nutrition and exercise have anything to do with it. I wondered if Igan is more prevalent in this current generation with our terrible health habits, fast food restaurants on every corner, rising obesity. environmental issues, homes full of questionable cleaning products/ beauty aids etc.

Members of the Igan group told me they had looked at every angle, but came up with nothing. I just wonder if the obvious has been skipped that most ppl live such unhealthy lives. Is what we put in our mouths and the couch potato lifestyle of today etc. responsible for tearing kidneys down? I have no idea. Just know that nothing I have ever heard in dialysis or prior from the medical ppl is about building healthy lives - rather it has been about putting band aids on broken bodies. I may be way off in left field, but it never ceases to amaze me how few ppl, including medical professionals, have any concept of properly taking care of their bodies. We take care of every thing else… why not our bodies?

Hi Jane,
According to this U.S. government site (, IGAN is one of the most common kidney diseases. It can occur at any age, and the causes are unknown. We don’t have any reason to believe that diet contributes to IGAN, but since we don’t know why it occurs, who’s to say? I agree with you that we literally are what we eat. We build our cells out of what we put into our bodies. So, if all we eat is fast-food or all of the junk that resides in the middle of the grocery stores, it’s not surprising that so many of us are facing chronic diseases of various sorts.

Dori … and Jane,

As you can see, I have not bought into this one as I am not convinced that Jane’s thoughts on this apply widely … or at least that I as a lone nephrologist can influence or change societal practices. Certainly, her views are views she is entitled to have and express, as she has, but, as for any attempt on my part to change the ingrained dietary habits of dialysis patients and, more broadly, of societal practice and eating patterns too … this is beyond both the scope of this site and of me.

Yes … I wish we all ate more wisely, cleaned more ‘naturally’ - indeed, I wish we would/could do so many things better than we do - but we don’t. I don’t … as I suspect you and all others who read these pages don’t.

It is probably not useful - and it is beyond the scope of this forum - to speculate on the potential causes of this or that renal disease. Yes - there may be dietary influences, co-factors or even causality of progressive kidney disease by diet … but the fact remains, we just don’t know.

Maybe one day we will better understand and be able to choose and control our environment - the diets we eat, the fluids we drink, even the air we breathe - but, until comes the time we do, to speculate and propose in an area so fraught with difference and uncertainty simply promotes our individual guilts and anxieties, without any potential benefit beyond an unhelpful sense that it was ‘all someone else’s fault’ for not teaching, warning, alerting …

I simply do not personally wish to share in that path or that argument.

For me ? … it is back to dialysis, back to dialysis remediable issues and back to factors where I might have ‘a snowflakes chance’ to make some true difference.

And, if by saying this, I have offended some who read these pages through my approach, then I do sincerely apologise … but, perhaps it is time to move this post aside. I doubt it will take us much further.

John Agar

Dr. Laird,
Yes I know you were speaking in general about the survivor quotient. I meant I think just like you as far as having a strong desire to live and I sure do not want anyone or anything robbing my life away from me! It has always amazed me how few patients fight back and I have some theories on why that is that I’ll save for another day.

That is a very interesting observation about why you didn’t need binders on in-center dialysis as well as now. If I had known this, I might of practiced body building lol. During the yrs prior to nocturnal, I took so many binders, that I still find myself wondering if I took my binders eventhough I don’t use them anymore lol!!

And I have never heard another patient say that he keeps his PTH at 150 as if you have strict control over it. Do you take more labs in order to watch it more carefully? We only take PTH 1x mo. I will have to try to observe the sun connection. Optimize is my favorite word. How do you decide what optimal is for the various labs? How much phos foods do you take in in a day- I mean it seems like it would be a very small amount. That’s why I asked you if you are a vegetarian.

What do you mean re the preservative factor limits your diet? I know what you mean about time and dose dependent. With more volume it takes longer to do a tx also. I used more volume and got my txs up to 2 hrs 50 min, but that was the most I wanted to sit there 6x. Noturnal was the total solution for me.

Hello Jane,

Thank you for your post. It sounds like you are trying to switch from 3 larger meals daily to 5 or so smaller, more frequent meals. Smaller, more frequent meals can be a helpful pattern for patients who have decreased appetite and are trying to consume more calories and protein. It sounds like you are in the habit of eating 3 times daily and are having difficulty switching your routine to more meals. You could try sticking with 3 meals for now and try to add in 1 or 2 snacks. Then slowly decrease the size of your meals and increase the size of your snacks. If you don’t feel well on 5 daily feedings, then maybe it is not best for you. Everybody is different so it is important to listen to your body.

Fluid restriction on dialysis is probably one of the most common complaints I hear from my patients. Although it is not easy to follow, it is possible to maintain a healthy diet and good nutrition while following the fluid restriction. Probably the most helpful thing is to avoid salt and salty foods. As you know salty food causes thirst, excess drinking, and fluid retention. Some patients find that sucking on sugar-free sour candies helps with thirst between meals. In addition, soups and high water content fruits and vegetables (melon, lettuce, etc.) can contribute significantly to fluid intake.

In terms of exercise, I think it is important to speak with your physician before starting an exercise regimen. Exercise is so important for wellness, however it should be done as tolerated to prevent injuries. Water aerobics, as you mentioned, is a great form of exercise. Many of my patients enjoy walking, yoga, and dance. Good luck with your lifestyle changes to enhance your overall wellness.

LeeAnn Smith, MPH, RD