How did you find a renal dietician to me... - Early CKD Support

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How did you find a renal dietician to meet your needs vs one who has a fixed diet for everyone based on their stage of CKD?

citruskayaker profile image

renal dietician

37 Replies

I imagine most dieticians would have a basic paradigm they work from (e.g. the aforementioned low protein) but would adapt things according to your specific profile. If, for example, you were handling potassium okay, there's be no need to place you on a potassium restricted diet.

And if there things you didn't want (e.g. wanting to retain red meat to some degree) then the dietician would accommodate that.

No point in a diet someone won't adhere to. At the end if the day, a dietician suggests and we follow to the degree we want to.

All that is logical, however, I need someone to keep me at Stage 3b as long as possible. I already have current blood work from my nephologist. Diet, weight and exercise all matter but I am somewhat afraid of supplements since they caused my problem in the first place.

The person who is going to achieve that aim is you. For you are going to be the one who closes which path to follow.

You'll chose your dietary path (in choosing your dietician). You'll chose whether to follow a path involving supplements or not.

This is where self advocacy rubber meets the road. There is no way to avoid you being the decision maker. It merely remains to decide how informed or otherwise you are going to make yourself be. You can throw a dart at a list of renal dieticians and hope for the best. Or you can take charge and use a renal dietician as a tool in your self determining toolbox.

The more you lean towards the latter, the more likely you are to achieve your goal

There will always be gamble: whether on supplements or doctors. A doctor following an outdated, ineffective path would be as damaging as a supplement, if you see what I mean. The only way to lessen the gamble is to start digging into things as satisfy yourself.

PS: I'd set my aim at getting to 3A as a first target if I were you. Settling for sticking at 3b isn't bar to be aiming at.

So what is your bloodwork? Obviously creatinine is well out of range - that's what decides your eGFR. What about urea? That's a direct consequence of the amount of protein you're consuming.

What else is out of range in bloods?

What about protein / albumin in urine. PCR / ACR (ratios)

BP?

On ACE or ARB?

Creatinine 1.95, Urea N2(Bun) 47, Bilirubin total 1.4, Red blood cell 3.95, Hematocrit 38.3, no ratios but protein and albumin are both in normal range. BP normal with statin. No ACE or ARB. Blood in urine. Gout controlled.

Similar red cell / hemocrit to my last blood. Those taking a definite drop from historical as a result of going on a plant based diet, it was felt by my RD.

That urea. Its quite a ways out of range if I'm not mistaken (normal range 7-21?). That would be an indicator for your going on a low/very low protein diet right there.

This is an example of how you would assess your RD and self advocate: if they don't aim to get the urea in range by chopping protein intake, you can ask why not?

Since a plant diet is indicated for low and very low protein diets (meat and animal is high protein) you could also be addressing your cholesterol and the need for statins. Again, you more in the driving seat - aiming to get rid of meds via something far more desirable -> dirt.

TY. My statin is a very low dose, but I have read in a CKD diet book that statin's can have positive benefits. When you get contradictory suggestions, I feel it is best to stay the course and make other changes to see how that impacts things. Long before CKD I learned that statins help cleanup the blood vessels, reducing the risk of heart disease. You probably know that heart issues go hand-in-hand with ESKD. I like to think long term and family history includes myocardial infarctions. Cholesterol is not currently an issue, but with reduced proteins and meats I may not need the statin. Will put this before an MD this week.

Understood - its always a difficult one on meds. My own natural inclination is to tend to want to stay clear and reduce if I can.

But given what you say I'll look at this clean up function. I gather vascular calcification is the biggest of the CKD-related heart issues that nobble us.

I was looking into why it is that elevated urea is bad. It's a toxin but what.more than that? How does it affect us. Turns out one if it's activities is to suppress the activity of the cells (phagocytes??) that clean up our vascular system.

So clean up is good. I'd just have to consider the reported downsides of statins.

So what do you think of the concept of cleansing the kidneys?

I haven't considered it other than not dumping stuff on them in the first place. Limit protein, for instance, so that the blood it's trying to filter is as near to normal blood as possible rather than a cess pit :)

Hydration seems to be recommended by all so I gave that a whirl as well, although I don't particularly like water unless it's a solvent in coffee or beer.

Hard to answer this question because you are not clear what specific need you think you have that is not being met by the current dietician. AND you did not indicate if you told the current dietician about your concerns. IF you told the dietician your concerns and he/she did not give you satisfactory answers then try another. You see it all depends. I will give you a silly example (I'm sure you are not saying this, it is just an example to illustrate my point). Say for example in the standard dieticians plan it says "no beef products at all". You however feel some should be allowed, that you have a need for it. The dietician is NOT going to change their advice. There are pretty standard plans based on your stage, blood tests, etc. As Skeptix said, you are "normal" in your levels in one category, then there is no need to restrict intake of that (i.e., potassium). However it is not that simple for the dietician to say, okay you can have normal potassium intake, because you have to consider what else could be in that food item that you are NOT supposed to have.Bottom line, if you are not happy with the one you have, speak to your kidney doctor and request a change. Also, contact your local hospital. Most have lists of dieticians in your area. Also your regular physician should be able to recommend some dieticians.

So I lack any dietician to begin with. My nephrologist has not told me my lifespan is decreasing and I should really see a dietician, so I have some doubts about any referrals from her. Although I am not diabetic, I do have gout which is controlled by diet and medication. The hospital suggestion is a good one! My GP may provide a lead, but I need it to be someone specializing in renal diets. TY

I'm not clear why you need a Dietician and am afraid you might be looking for a miracle that may not be possible. It depends on what your diagnosis is? Have you had a biopsy or is it just a watching brief ? Obviously being a healthy weight is good and its vital to drink plenty of water but a diet may not make any difference to your function so please ask your GP before embarking on any change of diet or even worse parting with any money for any books on improving kidney function which may be misleading. I'd urge you to contact your local branch of the Kidney Patients Association who can give you specific advice on services closest to you. In Kent the branch hold regular meetings with professionals including dieticians who are able to help people. You can just ask your local Renal Hospital and they'll give you the details or it may be online. Meetings here are online because of Covid but its nice to see people and swap experiences.

TY. Local dialysis centers will not talk or provide referrals until you are a patient. By then dietary change is too late to do much good. Not looking for a miracle, simply hoping to extend my longevity and retain my quality of life... just like all of us here. Excess water is not good for the kidneys according to a clinical study. However, flushing the kidneys is helpful to remove toxins and drinking water can curb your appetite, helping with weight loss. Changing diet to "unload" the kidneys is a good thing if you wish to slow functional decline. Staying active helps by reducing waste since you burn calories instead of dumping them into your system. Our local hospitals have mixed reviews including some horror stories. This makes me reticent about rolling the dice with them before a crisis leaves me without a choice.

Hi! I understand your concern and hesitancy. If you want a tailored diet based on your full personal medical profile, you'll probably want to find a "registered" dietician who will draw your blood to seek that information, set up appointments specifically to guide your actions, etc. We found the "renal" dietitian provided by our dialysis center to be focused exclusively on generic renal situations - recommending white bread, rice, apples, etc. Same advice given to everyone, no exceptions. This advice doesn't work for those with diabetes; for example, these items only fuel the attack on the kidneys due to high sugar and/or carb content. Our nurse at the center was very aware of the problem and was actively trying to change the dietician's advice as almost all patients there were diabetics - but it was mostly shrugged off with off-hand generalities. It's hard to find a "registered" dietitian but, if you do, they are a valuable resource. Insurance generally will pay for their services. Wishing you luck!

So you have pointed out one of my greatest concerns... a generic program not tailored to my needs. I like the idea of having an older experienced dietician, but I want an updated program vs the standard. So perhaps a younger dietician will have newer ideas about renal diets, yet those persons lack a track record indicating success or failure. Almost a catch-22 situation, if you are familiar with that term. TY

Yes, it's difficult to trust medical staff. I think a good sign is when a health professional takes your medical history, draws your blood, gives you a specific diet plan, asks you to keep a schedule, etc. That indicates to me that he/she is interested in me, specifically. When requesting an appointment, you may want to ask the scheduler how the dietitian handles her/his patients. Great dietitian can be hard to find, but they do exist.

TY. We all know medical care is complex and the demands on physicians are overwhelming. Telemedicine allows those who live in rural areas to connect to top professionals so I am exploring this option also.

Dunno if I told you about kidneyRD.com? I checked them out to a reasonable degree when it appeared I wasn't going to be able to get a renal dietician in Ireland.

The trouble with RD's is that they traditionally operate from a dialysis/transplant perspective. Up until recently, there was no significant dietary treatment paradigm available.

Consequently, few dieticians operated in this space. Indeed, I suspect you won't be able to access a renal dietician in the NHS arena: you're not at the stage where they operate and they don't operate privately- there has been no call for them to operate there.

Indeed, the latest guidelines recognises there will be trouble implementing RD led dietary intervention at early stage - there being no RD's trained/ available

The above mentioned kidneyRD.com are clued in to the KDOQI 2020 guidelines and are operating the latest low and very low protein diets (using the keto supplements). (Presumably, since they are recommending the supplements they are happy as to their safety. But that question needs to be asked)

They have realised that there's work to be done at early stage and have stepped out of the end stage arena where they formerly operated

You can get a sense of them for free via live webinars and they do a free 30min or so consultation were you get to hear about what they offer.

If you were looking at them to hold your hand and lead your diet for you (meal plans etc) then it would be pricey. But they seem professional enough and are (US) board certified RD's.

Another alternative is to steer yourself to a degree and to have them watch your bloods so as to help stop you erring badly. That would be cheaper but take more input from you.

My relatively brief research tends to confirm exactly what you have said. It's simply too late at stage 5 for diet to make a huge difference. It amazes me that dialysis "corporate" dieticians are not readily accessible to all CKD patients. About 20% of all Medicaid funds go toward dialysis. ...So I need guidance and then I will do the work, but I have an RD contact I will be exploring this week, so I'm not sitting on my hands with the gearshift in neutral like other sheeple. Thanks for the tip on kidneyRD.com

That website looks really promising and I've initiated contact with them.

Great.

I don't know if I mentioned Lee Hull's book, Stopping Kidney Disease. Its a fantastic, get-to-1st base book on matters self help and kidneys.

If you read that (twice, it's dense) you'll know more than most nephrologists on the latest guidelines on CKD management through diet. A great way to get up to speed and it will help your conversation with RD's. You can get the jist using Look Inside on Amazon.

I don't follow Lee to the letter bit I would take a decent steer from what he says and would aim to incorporate more of what he says as I go on. He doesn't cover everything (hydration and gut aren't covered) but a great intro nonetheless.

If you've time on your hands, read the National Kidney Foundation's KDOQI guidelines 2020. They'll give you the latest approached to various aspects of treatment, including the low and very low protein diet. They are a bit dry to read but condensed and the distillation of the latest science. You want an RD abreast with those.

I'm months behind you on my self-education, but I hope to catch up. Thanks for your input.

It doesn't take long but the more you learn the more you realise there is to learn. Thing to avoid is to let it become your overriding concern to the exclusion of everything else. Inform, make the adjustments, see what happens..

So, I'm sold and it helped to see that KDOQI backed up Lee's program. Seeking RD this week to see if she knows the program. Need some bloodwork for a couple things, will ask my GP who is pretty co-operative. Just finished the 1st book. Going veg or vegan but giving up grains too is very difficult as I love cereal with almond milk. Need to do VLP with keto acids. Only 10-15% succeed, not good odds. However, adding years of longevity is a good motivator. Maybe I should just do meats, dairy and eggs initially then do grains later. Lee says you need to go all in but if that means long term failure is it the best course? Rhetorical question. One for my new RD or RDN once chosen.

That was quick!

For reasons that will become clearer as you go on, it's well worth having your docs on board and backing you. You might find (as I found) that they are not so much leading you (since they aren't up to speed on this thing) as supporting you. And you might have to give and take a little with them. But they'll spot things that you don't know about, especially the RD

For example: my renal dietician, who is doing this as a bit of an extra curricular to her day dialysis job, wants me to go proper sVLPD (supplemented with keto very low protein diet) rather than Lee Hulls way. That means overall diet is 0.6g/kg rather than Lee's 0.8g/kg. Her view is that the literature supporting an sVLPD is based on the former rather than the latter protein target and she's interested in seeing how it works with a "live" motivated patient. Lee might either want to avoid people (whose medical issues he has no oversight into), cutting it too fine on protein. And/or he wants to sell more pills (he makes Albutrix, although you can get Ketorena).

Trouble about grains is that they tend to add protein for not a lot of nutrition. And sticking to low protein is tough enough as it is whilst getting good calories on board.

I didn't go all out Hull myself. I'd done a lot but his diet book is too limiting and difficult to follow and a bit tasteless. But I've taken many of the principles on board. And I'll probably go deeper as I establish things.

It's got to be doable - you're right there.

I have to admit I got really confused along the way here, reading the various posts and some of the things you describe. At first I thought you had a dietician that you were dissatisfied with. My answer was based upon that belief. But if I sort out all the posts it seems to me you do see a kidney doctor. You are stage 3b. Your current kidney doctor has not recommended a dietician. You wonder about your life span because your kidney doctor has not said anything to you on that subject. Well that is EXACTLY my case and it is pretty normal. I have been 3b, at a fairly constant level for a little over 4 years. I do not see a dietician and my kidney doctor has not recommended one. Her advice was simple. To keep my protein levels at or below the normal daily recommended consumption rates for anyone (people with our without CKD). To avoid excess (again to stay at normal daily intake recommendations as labelled on all food product) salt, potassium, phosphorous. To stay hydrated but no need to drink in excess. Just judge my hydration level by the color of my urine (if too yellow you are not hydrated, but it does not have to be totally clear). Then I see her every 6 months at which time we do blood and urine tests. If there was some abnormality (such as high phosphorous level) we would make an adjustment. To date we have not needed too. Concerning life span her answer was simple, "I am not God". A patient at 3b can stay there for a long time and progress to the following stages, every so slightly, and basically live normal lives. Others do not. Here is a quote from a reliable paper concerning stage 3 life span:

At this relatively early stage, you do not need dialysis or a kidney transplant. Life expectancy for stage 3 kidney disease differs between men and women. A 40-year-old man has a typical life expectancy of 24 years after diagnosis, and a 40-year-old woman with the same diagnosis has a life expectancy of 28 years.(written Jul 10, 2020)

That said however we must keep in mind what is typical??? And it does NOT mean every 40 year old man or woman will achieve this many years, nor does it meant that every 40 year old man or woman do not exceed this average. None of us are typical.

Another key point. Many, many are labelled as stage 3 CKD who really do NOT have any kidney disease. For example. A "typical" person may have a kidney removed. The other kidney may or may not pick up the additional workload. In general a person with only one kidney has a higher Creatinine level (about 1.8 or 1.9) because one kidney alone can't filter out all the Creatinine as well as 2 normally does. This person is labeled stage 3 CKD. But yet, their existing kidney is not diseased or weak at all. So there is a lot more to it than just a simple formula that labels you stage 3. You for example indicate that some supplements you were taking "caused" your CKD. Perhaps discontinuing these supplements, and given time, your kidney will improve and the "damage" caused by these supplements will be repaired.

You have to place your faith in your kidney doctor. If you have one you don't like or distrust, change. If you have one you like, the pose to her/him the exact questions and feelings you have posed to us (all amateurs). Best of luck

Wow, you must be my doppelganger 😀. At least as far as CKD goes. Actually, I don't care about living forever and am not afraid of death which is a natural part of life. However, I want quality of life for as long as possible. I think that from stage 4 on, quality and time go downhill. Thanks and may your life journey also be fulfilling and happy.

Listen to me closely :). In addition to abnormal kidney function I have stage 4 cancer. My days/months are very limited. So naturally this supersedes any concerns I would normally have about longevity with CKD, etc. Of course it enters your mind about death if it every comes from CKD, etc. BUT I always tell my oncologist, all I want is quality. Not quantity (of course I would take both, lol). She tells me she wishes more of her patients would follow that attitude. That she finds, as unusual as it sounds, those with a more "positive" accepting attitude do FAR better than those who indulge in excessive self pity, woe is me, etc. I always figure if my days are limited, no matter how few, or how many, who the hell wants to spend them sitting around waiting for the last day, full or worry, missing the joys in life that still exist.About stage 4 and reduction of your quality of life. While your life changes, if and when you do dialysis, it still is LIFE. You have appointments 3 or 4 days a week. But you are not totally incapacitate. Have a look at this website about stage 3. Do NOT make up your mind that you will progress to Stage 4, nor when it will be, nor what it will be. LIVE today, not thinking about years from now.

freseniuskidneycare.com/kid...

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medway-lady profile image
medway-lady in reply to RickHow

Yes so true so and I'm sorry about your Cancer too. I have Rhumatoid Arthritus which won't kill me and a few other things but have no intention of going quietly into the night. At stage 5, I did not have a huge amount of energy but just paced myself now 4/3b I'm never going to get the normal function back but I live a normal life. I ramble but won't ever go back to Base Camp 2 on Everest, I was admitted to hospital not even knowing I had a problem it was such a shock. I came home barely able to walk upstairs and unable to shower alone and started by slowly doing , laps of the dining room table, then done to the patio then down the garden then the road etc. It took a lot of determination and effort but slowly things improved and now even at just 27GFR life is good. I'm fully aware its not just GFR but my Creatine is fine as are all my other bloods so I'm happy that it is likely that things will remain stable for a good while yet. I can't see into the future but not going to look for trouble either.

My EXAMPLE was intended to clarify my point of view. I do not have cancer and am not seeking sympathy. Instead, I am here to learn and understand other views. Thanks for taking an interest and know that I am interested in all my contacts as well.

I'm sorry I replied to RickHow.

I like to be prepared and to think long term. I do not wallow in self-pity and do not seek sympathy. I could die of a car crash tomorrow, no problem. When I bought a solar system it was an investment I was proud of and has benefitted me. Being aware of possibilities is not resignation or negativity, it is simply education.

medway-lady profile image
medway-lady in reply to RickHow

I totally concur its different for everyone and I trust my Nephrologist who I first met on the ICU some three years ago this month, in fact it was next week !. I do the same re colour of urine and had same advice. Drink more, continue to eat healthily and stay active no medication as mine is an injury as I crashed to stage 5 now 4 / 3b and life is normal. I had some time in hospital and steriod therapy which didn't work and a biopsy and lots of tests. So now I'll not climb Everest but do live a normal active life. I was advised that life expectancy is not something that can be discussed objectively as too many unknowns but it was ok to plan for a holiday next year and really isn't that all anyone can do. I see my Nephrologist every three months and bloods, weight etc are checked so only thing I'd add is beware of UTI's as they can cause more frequent problems.

Congrats for your current status allowing a normal lifestyle. The only way to talk about longevity would be based upon general mortality rates, but those do not allow for many conditions that contribute to mortality. Oftentimes, it appears that physicians create a false picture to give the patient hope and greater peace of mind. For example a terminal cancer patient may be told they may live another 3 years when in fact they are likely to die within the year. Personally, I would not want false hope, but the best realistic guess.

One thing to keep in mind. Each day there are hundreds of doctors working on cures for diseases. When I was told my cancer had spread to my bones, from my removed kidney, the "average" life expectancy was "unknown" because we are ALL different. But the very next appointment I had with my oncologist she informed me a new medication (an immunotherapy, not chemotherapy) was JUST APPROVED by government for use on Stage 4 kidney cancer. Keytruda. It is an IV every 3 weeks. It is NOT a cure. But its goal is to try to keep the cancer from spreading further. The side effects are minimal for me. Some have big problems. The point is there is constant research.

Sorry if I mislead anyone, I do not have cancer and do not currently face a death sentence. The EXAMPLE, was simply to illustrate my point.