Hi. New member with Lee Hull questions - Kidney Disease

Kidney Disease

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Hi. New member with Lee Hull questions

Skeptix profile image
Skeptix

Hi there.

CKD diagnosed at mid-40's gfr about 7 years ago. Gfr has remained steady until recently, now mid 30's (perhaps recent bout of Covid implicated).

I have to get into the saddle on diet and lifestyle (am in good health generally, 57 male, no symptoms, on 7.5gr ACE). Am reading Lee Cull's book at present.

Have a few questions if anyone can lend a hand?

Anyone got a view on Lee Hull's approach (aside from the book being quite dense and the diet strict and the fact he's flogging an expensive supplement)

Can anyone recommend a comprehensive nutrition tracker app that would bore down into kidney relevant nutrients? Preferably free but if paid then fine..

My nephrologist seems to have taken a very back seat approach. At mid 30's gfr she's thinking of maybe perhaps booking a renal dietician in the future. She takes the same fatalistic approach Lee criticises: decline is inevitable and little to be done until symptoms start. Is this universal?

Thanks in advance

15 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

HI Skeptix,Lee Hull has some good ideas but you are correct, he is pushing a supplement. Do not need that. The best step is to find a renal dietician and have them work a lifestyle change diet for you that is kidney friendly and healthy but that you can stick with. No diet is any good if you can't stick with it.

In the meantime, stick with these thoughts. Lo salt-lots of water. More veggies than meat. Red meat is hard on the kidney so limit that. Chicken, fish are ok in limited amounts. Dairy is also hard on the kidney. So limit cheese, ice cream, yogurt, and milk, especially milk. Eggs are good, especially egg whites. But again, they are protein so measure the amounts of protein you eat. Setting those ranges is what a dietician will do for you. But there is information out there on protein levels for the kidney.

The best solution to help the kidney is go as much as you can plant based. But that is pretty restrictive too and a definite life choice.

kidneyhi.org/dietitian-blog....

I use MY FITNESS PAL tracker. myfitnesspal.com/ It is free and I have it set up for the things I need to measure. You also can build a library of foods you eat often. But beware, the existing library is far from accurate for nutritional values of foods so make sure you check with other sites for accuracy.

There is a lot of information here on this site if you look under "Diet and Nutrition"

Come back with any questions you have.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

I too found that is better to use different sources for nutrition information. I also do lot of label reading, and keep a list of the routine foods I eat. Thanks for info on the tracker.

Skeptix profile image
Skeptix in reply to orangecity41

Am only just starting and its amazing how once seemingly innocuous foods stand out.

The trouble arises when you add in more 'factors' (Lee Hull's word). Its one thing matrixing for protein, potassium, salt. Quote another factoring for a veritable multitude of things to keep an eye on.

Which was Bassetmommer's point: the diet might be right .. but if you can't keep it...

There's a market for a kidney app there somewhere.

Yes! Labeling reading is essential. It becomes routine after a while.

Skeptix profile image
Skeptix in reply to Bassetmommer

Listen, thanks a million for that input BM. An informative welcome..

It's v. early days on the journey but I'm a mechanical engineer in industry who has spent a career around machinery, some of which has been troubled and in need of care and attention. I figure I'm made for figuring out and attending to this particular bit of kidney-machinery!

I'm interested in Lee's thesis/hypothesis about getting in early and hitting early-indicators that (it appears) don't figure on a typical renal dieticians radar. It fits with how I'd approach machinery: its those little unusual noises or slight rises in temperature are signs of things to come and shouldn't be ignored.

I'm only at p.50 and haven't made my mind up yet - it's techie and in need of proof reading/editing. Yes, he has a supplement, but that in itself isn't a deal breaker, especially since it appears .. er.. supplemental to his core message: this is war on every front possible.

I'm on the trail so will consider all info. You mentioned milk 'especially' for instance, whereas I just thunk animal protein. So I'll keep an eye out. And thanks for the tracker recommendation - I will check that out too. I've already noticed particular foods appearing in both good/bad columns, depending on which kidney resource you refer to.

It weren't ever going to be easy!

I happen to have been born gifted as an engineer (and am woefully weak in very many other areas. I'd have preferred being gifted in how to make money).

What's struck me from that vantage point is: how weak most people are who happen to work in engineering. They might be diligent (they might be not), eager , hard working, good time attenders, able to go the extra mile, collegial.

But they are not good engineers: they don't actually have it coursing through their finger tips as I've been blessed with. They miss obvious stuff, make huge errors, head in fundamentally wrong directions.

In light of that, how do I hand myself over to the care of a nephr or a renal dietician.

How do I know they are any good? Seems to me I can't but get deeply involved.

Michael__S profile image
Michael__S in reply to Skeptix

"In light of that, how do I hand myself over to the care of a nephr or a renal dietician.How do I know they are any good? Seems to me I can't but get deeply involved."

I have the same struggle and I'd be curious to ear what advices other can give. Beside I am still waiting to see a nephrologist and I don't have much experience to share when it come to CKD. I'd say do your own research. For example if you are looking for a renal dietician and you intend to stay physically active I'd try to find one that list sport as an interest. But at some point you need to take some risk and start somewhere.

Also my understanding is that the science can be both limited and contradictory at times and it's quite possible that you receive directives that may appear to be contradictory. Since you seem to care, ask for clarifications. There are many nuances and kidney disease are quite complex. It's also important that you ensure that each specialist are not working against each other. My (ex) Urologist was merely telling me low protein and avoid red meat and the nutritional instructions lasted no more than 15 seconds (no number given), I forwarded those information to the RD and the discussion lasted at least 25 minutes! Yours might just happen to have more specific concerns.

IMO nutrition in general is and should be personalized. This or that vegetable that work best for me might irritate your bowel for example. Or the amount of sodium or potassium that you are aiming for might be too high or too low and may need to be corrected further down the road. What is applicable for most people (e.g. Adequate Intake) may or may not apply to you, with or without CKD. It's the nature of the beast.

I came upon this post when doing an unrelated search. 1 red flag that I would add is when your specialist sound like he/she just watched a netflix documentary instead of speaking of science. healthunlocked.com/nkf-ckd/...

orangecity41 profile image
orangecity41NKF Ambassador in reply to Michael__S

Agree that some foods on a CKD diet may not be good due to other medical issues, learned I had to modify. One has to be proactive.

Skeptix profile image
Skeptix in reply to Michael__S

I suppose the issue is not having a clue whether they are on top of their game or rubbish at it. Someone, say an RD can come across convincingly, have a good manner and a good listening ear.

But be crap at the actual job!

It's not as if you can check for star rating like you do when figuring out which two man tent to buy on Amazon

-

As Bassetmommer says, you have to see yourself as their employer and hold them to task.

It's just that it's tricky to hold a RN to task unless you already have a fair idea about the advice they should be giving you!

Edit: read that link and there are a few nuggets (not least, be prepared to fire your doctor). Thanks.

Michael__S profile image
Michael__S in reply to Skeptix

Personally I am more concerned about whether he/she master the basics and with a good judgement than being on top of his/her job. Perhaps I am reading you wrong but to me this is a subjective term considering that a science-based approach is generally a bit behind.

And that's where, similar to what Bassetmommer said, it's important to work with your team. I don't think that your job as a patient/customer is to micromanage them but rather to work with them and have a productive discussion; to generate an effect that is aligned with your goal where each specialist is a part of the puzzle and achieve synergy.

Also there is nothing preventing you from educating yourself. There are plenty of books that cover science at the introductory level. I am still reading a book regarding science of nutrition and likely read more about human metabolism at a future time. By no mean will I become a nutritionist but it is an interesting read and it only helped me better understand the importance of nutrition, and the science behind carbohydrates, protein and fat -not the hype!

Jayhawker profile image
Jayhawker in reply to Skeptix

I’ve had to vote with my feet a few times before settling in with my current nephrologist. But it was well worth the effort!! Sometimes it’s a matter of finding the nephrologist who can figure out how CKD is presenting in your body specifically—just like understanding the engine noises you described🐶

Jayhawker

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Skeptix

"How do I hand myself over?" You do not. You are hiring professional to work with you, not on you. Many people feel doctors are omnipotent. How can they know everything. Not possible. So do your homework. . If you do not feel they are forth coming with information... If you feel you are not connecting with them... If you feel like you are bothering them with questions, then this is not the doctor for you. Try to get all your doctors able to see and communication on your behalf. If you can, sign up for a patient portal where you can see the conversations and your labs. Learn lab values so you can ask about them.

Having a good relationship with your doctor is on you as much as it is on them. Be prepared. Research on you own and then come prepared to your doctor visit with questions.

Ask for what you need as in referral to a dietician or nephrologist. A PCP is not who should manage your kidney issues but often they will not send someone at stage3 to one or to a dietician. It is your right to have one.

I had one doctor who told my husband that when they were doing testing on him they were checking for zebras. We fired him. I had a doctor who would not take me off a medicine that was harming me. We fired him.

Don't let doctors put you off. Develop a relationship with them.

Its your life in your hands, not theirs. Would you put your car in for repair with someone you do not trust?

Skeptix profile image
Skeptix in reply to Bassetmommer

That's the right approach alright. The issue is getting the expertise to assess them. Yes, there is those management issues: sharing info, clicking with the doc, being a partner.

But the key issue is expertise. Is this nephr or RD on top of their game. Are they up to speed with the latest research or are they.working of ideas long past sell by.

It's a Catch 22. You need some expertise to measure whether they have expertise. The alternative being handing yourself over.

I'd like to add that's it's important for one to know the primary cause of the kidney decline. Generally speaking, it's either diabetes, or polycystic kidney disease, or autoimmune disorders, etc. (Diabetes, sadly, is generally recognized as the leading cause for kidney issues.) Knowing the "reason" will then help a person tailor his/her diet in a more specific way. For example, those with diabetes need to tightly control their glucose levels. The kidney diet, unfortunately, doesn't address sugar and carbs; indeed it actually promotes rice, breads, sweet fruits, and more that will drive up those glucose numbers. So know what's creating your condition, and then select foods accordingly. Just some advice from lady who had a diabetic hubby with kidney disease last year and who is now on dialysis this year.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Darlenia

I agree with you on the carb and fruit amounts on the CKD diet. I got high blood sugar and have modified how much fruit and carbs I have. My Neurologist advised me to cut back on fruit and carbs. I had showed the PA my diet.

So, I kind of sped-read my way through the 2nd half of the book given I'd gotten the jist of his approach:

X, Y, Z are suggested as 'factors' adding to/subtracting from kidney disease progression

+

abstracts/conclusions from scientific papers supporting the suggestions

=

Factors X,Y,Z ought to be controlled such as to minimise their adding to disease progression/maximise their slowing disease progression.

Conclusion: all evidence points towards (very) low protein vegan diet + protein supplement (whether his or some other).

Thoughts:

1. Although I've not met with a Renal Dietician, it would appear their paradigm would not include many of the factors Lee has identified.

And it would not go as 'extreme' on diet until much later in CKD progression.

Certainly my Nephr merely advised half a nod in the "direction of a renal diet", limit red meat etc. vs Lee's no animal protein at all. This at eGGR mid 30's.

That is a stark difference. Who's right?

2. The book needs sub editing. I00 pages easily knocked off..

3. I'm not particularly worried about Lee selling a product:

a) Whilst Albutrix is mentioned, the book is too exhaustive and informative to be considered a mere sales pitch. Snake oil salesmen don't put that effort in. They only do skin deep packaging and illusion. The book is too dense to be a sales pitch. In fact - many will be put off by the science and not get to the point where Albutrix is mentioned.

b) He refers to his being the best but not only protein supplement.

c) He comes across more of an evangelist than anything else. If he spots the need for a low nitrogen / low calcium supplement that doesn't yet exist, then fill that need he will be compelled to. Related to that..

d) I work in the food industry and 100% agree with his concerns about the supplement sector. In 25 odd years and after 1000's of meetings in which everything under the Sun was discussed regarding the 'products' we manufacture, I've never once heard the word 'nutrition' mentioned.

Not once, ever. It does not factor AT ALL.

The IMPRESSION of nutrition matters though. Words on packaging like: low fat, prime, fresh, wholesome, low salt, best, nutritious, healthy). But saying something is nutritious doesn't mean it is.

And that's in the regulated food sector.

All bets are off if supplements aren't regulated, which it appears they are not.

Conclusion

Lee's thesis is plausible enough: go easy on your kidneys ( and heart) and they'll last longer. If bloods/urine show out of range measurements then damage is being done to your health. Act to bring them back in range. That will help your kidneys.

Aside from conformance to diet, this is a very easy thesis to test. Try the diet (90 days) and if it doesn't lead to an improvement, it's not for you. If it does keep going.

In my own case, there is very little being done to slow progression. Blood tests don't measure much and there's little advice on diet other than "go easy on red meat". Urea/creatinine are out of spec and getting worse without any movement towards action, BP isn't in the sweet spot range and it was me who suggested I bump my ACE dose.

Might as well give it a shot and see how it goes. Certainly it is me whose going to have to manage things...

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