Kidney disease is serious business. It doesn’t matter what stage you’re at – CKD 3, CKD 4, or CKD 5. It is serious business.
I don’t have kidney disease but I worked in dialysis long enough to know that nobody wants to be there. Don’t get me wrong, I am deeply grateful for the life-saving therapy of dialysis. But, I’ve read enough research to know the mortality statistics for people with kidney disease are sobering. And I’ve known enough people with kidney disease to know that quality of life is even more sobering.
Today I want to share my journey over the last 5 years being an educator within the realm of renal nutrition and why I’m kicking moderation to the curb in favor of clear information and guidance for you on how to preserve kidney function.
My many friends with kidney disease
As I write this, I’m thinking back on my time as a dietitian in the dialysis realm. I became friends with some great people. People I’ll never forget. My friend Jeanie comes to mind. She always joked how her drive from Washington D.C. to Columbus, Ohio was easy as a dialysis patient because she didn’t have to stop to pee. She’s also the one who taught me how to make my annual Christmas baklava since she was Greek.
I’m thinking of my friend who taught me everything I know about cars and motorcycles. He was 15 years and 3 transplants into dialysis and kidney disease. He truly knew everything so I was there as a lab informant not an educator. Monthly labs were spent talking about the best places to ride motorcycles or the latest and greatest cars on the market instead of phos.
Then there was my friend who taught me to make yogurt, and the other one who brought sardines to treatment (bad idea) and secretly confessed he was eating laundry starch. Or my other friend who taught me how to maximize my reps for weight lifting. Or the other one who ate Coke bottle gummies at his treatments because he missed the taste of his Coke.
I could go on and on about the many amazing people that I met as a dietitian working in dialysis units in Maryland and Texas.
These amazing kidney warriors came to dialysis with a smile on their face and usually a joke or tease for the staff despite their very real, very tough physical and emotional struggles. You know people like this, you probably are this person.
The sad part for me is that the longer I worked in dialysis, the more I saw that many of my friends in dialysis likely could have avoided being there.
After a few years in the industry it really started to bother me how many people were ending up in the dialysis chair that had every logical reason to NOT be there. Many had never talked to a dietitian with early stage kidney disease. Some had, but were basically just told to avoid salt and meat. What?!? How could that be the extent of the help with nutrition when the stakes are astronomically high???
As I became more and more uncomfortable with the number of people I saw on dialysis that I felt could have avoided it, I knew that I was working in the wrong area of kidney disease. There needed to be more help BEFORE dialysis.
Why I left my stable job in dialysis to work with people with CKD 3, CKD 4, and CKD 5
I had not been at my first dialysis job for even 3 months when I started getting calls to my office from people not on dialysis that were desperately seeking help. They couldn’t find anyone else.
I covered to some extent almost 7 different units during my 10 years in dialysis. At ALL of the dialysis units I’d get those “we need help to avoid dialysis” calls.
The best word for people on those calls is “desperate” and “motivated.” The best word for my response was “helpless.” Primarily because I really didn’t know the right nutrition treatment for people before dialysis. Surprisingly it is very very different than for people on dialysis. Secondly, because I didn’t know how to legally or logistically make it work for me or the patient.
So there needed to be a shift for me.
I felt health care for kidney disease was grossly inadequate and misaligned with needed outcomes. The small part I could play was to start offering professional guidance to help people BEFORE dialysis.
So 5 years into my dialysis career, I left a clinic that I loved and started a small practice. I dug into the science on early kidney disease and nutrition. I learned about insurance, business, and worked with my local nephrologists and their patients. I experimented with telehealth and creating better education materials.
Making the renal diet friendly
My initial goal in my business was just to make the renal diet more friendly. I always hated that the kidney-friendly recipes I found online had ugly pictures and often weird flavor profiles. So I started blogging at KidneyGrub.com with the intent of making the “renal diet” livable and lovable. #livablelovable was my catch phase for 4 years. Cute, huh?
During this time I was a full convert to dietary moderation aka, if you eat right 80-90% of the time you have a 10-20% wiggle room to do what you want.
I worked diligently to build a brand around a friendly renal diet and “can-have” foods. I explored recipes, food photography, cooking techniques, etc… to make every part of the renal diet friendly for people on dialysis.
Then HUGE shift #1 came for me. I learned about the Mediator Release Test (MRT) and LEAP therapy and the real essence of inflammation.
Huge Shift #1: Dietary Inflammation
Before I discovered MRT and LEAP therapy I knew diet caused inflammation, but did not realize how very deeply nutrition could play into quick and powerful changes in health.
Using the MRT showed me how incredibly effective just diet could be for helping people with their big difficulties. I took on a variety of clients at this time from fibromyalgia to IBS as well as my clients with kidney disease.
I was continually amazed that my clients’ symptoms reduced by more than 50% within 2 weeks on a consistent basis regardless of the diagnosis JUST with diet. Never before had I seen such a powerful and quick impact of nutrition on health.
Working with MRT also led me into the world of functional and integrative nutrition and a deep dive into inflammation. It made me dig deep into gut health, micronutrients, nutrigenomics, and hormone analysis. It made me think on a “root-cause” level instead of just on a symptom-management level.
I felt a change from just wanting nutrition to be more friendly to speaking to the serious impact nutrition could have on the trajectory of someone’s disease.
Ultimately I came to understand that people like you wanted to get better. Period. People want to enjoy their food because we all do. But first, people like you need to know your food is working for you not against you. I often think, “If I had CKD 4 or 5, what would I do to avoid dialysis?”
All of these many experiences and A LOT of reading on inflammation led me back to kidney disease, inflammation, and the diet link.
I figured if people were getting well from other inflammatory disease states like eczema, IBS and fibromyalgia – why couldn’t we use the same tools to hyper- target kidney disease management at a very personalized level?
Or in other words, if food sensitivities were causing such extensive inflammation in other chronic conditions and autoimmune conditions, why couldn’t food sensitivities also be a factor with inflammation and kidney disease? Especially autoimmune conditions. So many people like you want answers, and tackling inflammation and the immune system was working for many of my clients.
I had a few clients with CKD willing to try the MRT test and LEAP therapy to see if it would impact their GFR results beyond classic measures and sure enough I had several clients with amazing success. They changed their diet, squashed inflammation, and weren’t heading to dialysis. THAT is what needed to happen for way more people.
Thinking about renal nutrition on a whole other level
With a new insight into inflammation and kidney disease from using MRT and LEAP therapy, I began seeing kidney disease very differently. It didn’t matter what stage – CKD 3, CKD 4, or CKD 5- I began seeing my role as absolutely pivotal in the outcome. After all, with just diet, there had been some encouraging healing for some of my clients.
Instead of thinking about symptom management (aka, decrease blood pressure, control phosphorus, decrease potassium, lose weight), I started thinking about WHY the kidneys weren’t working. HOW could we support function? WHAT was impacting the workload? WHAT was causing inflammation?
I shifted from trying to prevent complications to focusing on slowing progression and preserving function. In a nutshell, and as stated previously, my practice goals for my clients switched from primarily symptom management to really digging into inflammation and slowing progression of the disease.
I dived into the research as much as I could.
If addressing inflammation turns around kidney disease, I wanted to know every single factor of diet that could be involved with inflammation and renal decline for my clients.
My mind was boggled with WHY so many people in the States were enroute to dialysis and not being given the option of really addressing nutrition. My patients with CKD 3, 4 and 5 came to me because they felt there was more they could do for themselves beyond just prepping for dialysis or transplant.
And they were right – there is more that can be done to preserve kidney function. Things you can do too.
Is diet change harder than dialysis?
I refuse to buy the answer that “dietary change is hard and people can’t be compliant for long enough to make a difference.”
If dialysis is staring you in the face for the near future, there is a huge capacity to make changes because there is a lot of motivation. I was having client after client committed and making changes. And guess what? They stayed committed because they had results.
Sure there are people that aren’t going to make changes.
BUT, there are LOTS of people that can make dietary changes and WANT TO make dietary changes. I know them from dialysis. I had lots and lots of patients in dialysis that were meticulous about their health and I think would have had different outcomes if they had just known what to do.
I see the capacity and drive for change in my current clients. They’re amazing people that make incredible changes. I love working with them because they inspire me daily.
In the renal community, patients often refer to themselves and their fellow patients as “kidney warriors. This is how I see every single one of my clients because they put up a valiant fight to live their best life regardless of kidney disease every. single. day. What they need is encouragement, support, and clear information about kidney health and less focus on disease.
Many people aren’t given THE CHANCE to take responsibility for their disease. A flyby doctor recommendation to “don’t eat red meat” or “lose weight” or “cut down on sodium,” IS NOT nutrition counseling nor does it even come close to using nutrition as a treatment for kidney disease.
It is no wonder that the United States ranks 66th of 183 countries for kidney disease outcomes by WHO. It seems inexplicable that a country with billions of dollars poured one disease state (kidney disease) can have such poor outcomes. Medicare spends $79 billion on chronic kidney disease alone. That doesn’t count the $35 billion spent on dialysis. We spend more than almost any other country, but we rank 66 of 183 countries!! How did that happen?
The more I worked in the “before-dialysis” area of chronic kidney disease, the more I realized that there were even more people than I originally thought that needed to get solid information about how to use nutrition as a treatment for their kidneys. No matter what the stage – CKD 3, CKD 4, or CKD 5 – people were looking for answers beyond sodium and potassium.
Then the BIG shift #2 happened.
Big Shift #2: Adios moderation
One day my good friend and colleague, Jenn Moore, mentioned to me emphatically that nutrition is a treatment for kidney disease not a therapy. The statement hit me like a punch to gut and gave me chills because I knew she was right.
How are treatment and therapy different? It sounds the same but it is very different. It means that I now feel that teaching moderation is not aligned with what people really want.
BIG shift #2 for me has changed how I practice. I am kicking moderation to the curb.
For the last 4 years I practiced and taught “less meat meals” (still a handout on my website right now), “safe” dairy choices, and less protein in general. I used word concepts like “cheat days” and “moderation” as a counseling tool to help improve compliance.
You know what? I’ve still had some great results with many of my clients in this more relaxed approach. But looking back I can also see missed opportunities and the feeling that I missed something – especially for my clients with CKD 4 or 5.
Again, kidney disease is serious business. Diet for kidney disease isn’t like the diet you go on to look good for your 40th high school reunion, or the diet you try because you read the latest and greatest book talking about wheat, or lectins, or keto, or whatever.
Diet for kidney disease is a scientifically valid, serious treatment for a serious disease.
As a professional I feel this means that my clients from now on get serious answers and a serious, uncompromising plan. I’m nice about, but the conversation is direct.
Treating kidney disease with nutrition means you look at protein intake, plant intake, phosphorus intake, anemia profile, sodium intake, thyroid status, acidity of diet, micronutrient status, gut health, and the foremost contributing factors of inflammation.
My goal for every client is to be their support, cheerleader, and coach. I’m also an educator with a goal to give clear answers on reaching goals as quickly as possible.
I’m hired to give nutritional options so that people don’t feel like salad and beans are the only thing for lunch every day. Once we make a plan, see the results, and work toward a better baseline of health then we talk about experimenting to see how we can expand dietary choices.
What Big Shift #2 means is that I’m moving past just providing nutrition counseling, and into actually providing nutrition treatment.
It means that my website, especially the blog, is going to be changing. I’m archiving some recipes that I feel were on the “moderation” scale and focusing on only things that I feel are supporting kidney health.
There are loads of amazing websites now with great recipes for people on dialysis. I will now be focusing on uncompromising recipes for people not on dialysis.
The “perfect storm” of experiences
Shift #2 came because of a perfect storm of experiences recently. These include books and articles I’ve read, discussions with leaders in the field, and my own experiences with clients. Here’s a few bits from that storm that changed my mind:
I appreciate the passion and thoroughness of Lee Hull’s book, Stopping Kidney Disease. This piece from his book spoke to what I had observed with MRT and LEAP therapy and also what I was thinking about for my own clients with kidney disease:
“Dr. Caldwell Esselstyn wrote that “moderation kills” when it comes to diets for heart disease. His example is that hitting a brick wall at 100 mph kills all the occupants. The same is true for 90 mph, 80 mph, 70 mph and so on. The occupants will only survive unscathed when the speed drops to 10 mph. Moderating the speed from 100 to 70 didn’t work. We need to slow down from 100 to 10 to get the desired result.”
Also my colleague Jennifer Moore’s book, Plant-Fed Kidneys and many conversations with her about about treating kidney disease with nutrition, made me realize I could not start with a moderate approach.
Several other books and articles have added their influence into making nutrition treatment and uncompromising, clear plan of action. My CKD nutrition library at this point is piling up – literally. I’m kind of obsessive about reading everything I can find.
Then I was connected with a dietitian in Italy. Italy and most other countries uses nutrition as a first-line treatment with kidney disease. I was curious what she did in her job and her patient outcomes. She generously shared all her insights over several months of email. They are very good outcomes – outcomes I want for all my patients. People with stage 5 CKD, heading almost imminently toward dialysis, being able to delay it for as long as 5 years.
Just think if people were to get some nutrition intervention before they were on the precipe of dialysis? Just diagnosed with CKD 4? Or earlier at stage 3? Or, even stage 2 with risk factors? Nutrition treatment would literally be life-changing for millions of people in changing the trajectory of their disease.
In addition to this I have been digging into research and best practices for low protein (0.6 gm/kg) versus a supplemented very low protein diets (0.3-0.4gm/kg).
The outcomes are very different with these the low protein and very low protein diets, especially for CKD 4 and CKD 5. I’ve reconsidered how a “low protein diet” is taught and followed. I’m interested in implementing that type of dietary treatment.
KDOQI is in the process of releasing guidelines that supports very low protein diet as a recommended treatment to delay dialysis. Cochrane review already supports a supplemented very low protein diet. The one concern expressed in their review is really quality of life.
What I know is that good nutrition therapy makes quality of life with a difficult diet still very very possible. Besides, the alternative of quality of life on dialysis doesn’t really seem that much better.
Diet and Drugs: Nutrition treatment is as important as prescriptions
What are the options if you are diagnosed with kidney disease? Basically diet and drugs. Drugs manage symptoms. Diet nourishes health. Many people need both, but all people must at least have the diet part. If you kidneys fail you of course can get a transplant, but the obvious goal should be to keep the kidneys you already have.
The meds are important and I am an absolute advocate of every single person with kidney disease having a good nephrologist. These doctors seriously save lives.
But dietary education is not optional if you want to preserve kidney function at any stage – CKD 3, CKD 4, or CKD 5. The diet education I mean is more than potassium, phosphorus, protein and sodium. Those are important but there is more that can be done.
During my “perfect storm” or renal nutrition information and opinions, I decided that if nutrition is truly a key treatment for kidney disease, which I absolutely believe it is, then I must be involved in the conversation of making it front and center as a real treatment option with solid outcome results.
The renal nutrition conversation needs to be more clear and less compromising.
Definitely less confusing for patients.
I want to make the nutrition care for people with kidney disease in the United States, a first-class service. Renal dietitians are incredible at what they do – they really are. There is no one better to treat kidney disease on a large scale.
Most renal dietitians don’t have kidney disease, but but that doesn’t mean we don’t understand health struggles or restrictive diets or want to help our clients implement high-quality intensive strategies. I’m no stranger to major food restrictions personally or the impact of chronic disease on a family or individual. I’ve lived those same experiences personally – just not with kidney disease specifically.
Renal dietitians are serious about being advocates for their patients
I know many, many renal dietitians and they are a group of compassionate professionals, highly skilled professionals. They hate the “don’t eat that” mentality that often pervades the renal world.
Renal nutrition professionals are serious about knowing and giving the best information to their clients and so sometimes the message does come down to “don’t eat that.” Of course, hopefully it is accompanied by “this is why” and “eat this instead.”
If there is one big change I’d like to see happen in the next year by nephrology professionals it would be nutrition becoming a priority for people with kidney disease.
I’d like to see the 5 minutes of nutrition advice patients get from their nephrologist be shifted to 5 minutes of encouragement for nutrition as a treatment. Then I’d like to see patients referred to high quality programs and dietitians that are focused on helping people get results.
I met with a large nephrology practice this past week. They have a patient base of 13,000 patients with CKD. They have one dietitian coming a couple times a month to see clients. I was floored. I kept wondering where all those people were getting their nutrition guidance. I wondered how much kidney function and quality of life was being lost while most of those people were navigating their nutrition alone.
Kidney disease is serious business and there needs to be a much higher priority on nutrition care. The time for big changes in the treatment of kidney disease is long overdue and needs to start now.
Writing this, I am making my public commitment to aligning my professional services with renal nutrition that gives people the hope and outcomes they are looking for.
My purpose is to provide clear, uncompromising, science-based information on ways to slow progression of kidney disease, preserve function, prevent complications, and dispel confusion.
It’s taken me 5 years of private practice to get here. But I can feel from the top of my head to my toes that while I don’t have kidney disease, I need to be a fellow kidney warrior in supporting better interventions for kidney health. This means way less moderation.
What I’m doing to make nutrition treatment accessible for LOTS more people
Talking about nutrition being important is nice. But it means nothing if people can’t really get the guidance (Um, remember that practice with 13,000 people with CKD I just mentioned). So, I’m giving you a sneak peak on what I’ve been working on. Why? Because people with kidney disease, even late stage CKD 4 and 5, need to know there is hope before dialysis and besides dialysis.
- Working on a series of blog posts to talk about some serious nutrition principles for kidney disease and flooding my social media and e-mail lists with the information.
- Assembling a team of dietitians and health educators who are passionate about outcome-focused, doable nutrition steps and programs.
- Working on a program that makes sense to people with kidney disease, coordinates with Nephrology teams, and gives people the information and guidance they so desperately need to preserve their kidney function.
You can get the help you need in my new RenAlign program. Join the waitlist here.
True to my uncompromising objectives above – I’m launching the first round of our program for people with Stage 4 and 5 CKD on Oct 1. (A program for CKD 3 is in the works!). Our initial program has limited enrollment. Why? Because our number one priority is to make sure every patient has adequate support and we have the best renal nutrition program around.
People on our wait list get first priority access to the program and some pretty amazing discounts. You can join our wait list here and be a part of making nutrition treatment a reality for yourself and help give us feedback on making this an amazing program for other kidney warriors following in your shoes.