I just reread Lee Hulls book with the many, many studies of protein restriction, but all the studies seem to be of stage 3 people with proteinuria, He himself still has proteinuria . So just wondering, it you're trying vegan and protein restriction, like me, what your results have been. My serum creatinine is too high and GFR too low and of course that's the main thing, but how important is it that my kidneys are so far keeping protein out of my pee? (User name was whats, but that was 'cause I pushed ENTER too soon and didn't know I could change it)
Anyone else with Stage 3 but no proteinuria? - Kidney Disease
Anyone else with Stage 3 but no proteinuria?
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WildIris
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Hi.
Great that you've no proteinuria since that damages the kidneys.
What's your urea (BUN). If elevated then that's the main reason to restrict protein from Lee's perspective (iirc)
I don't know what my bun is, I'm having trouble getting hold of my actual labs, but my doc didn't mention it. Doesn't even want to see me for a year. I'm just wondering about Albutrix versus just eating more plant protein, tofu in particular, since Lee Hull emphasized proteinuria as an important sign of how much protein your kidneys can handle. I'm glad to hear that Creatine isn't actually damaging. Thank you for replying.
I'd get my labs (and any historical labs whilst your at it). A doctor not mentioning something doesn't mean "there's nothing to see here, folks". Like 'your urea is elevated' is meaningless to 99% of the population. So why mention it.
The doctor is in the driving seat (unless you take over). Why would a doctor mention anything much to you?
Albutrix is, in the first instance, a device for dealing with urea and other toxins arising from your metabolising proteins. The simple ideas are:
- eat plant protein instead of meat protein. Meat is acidic (a separate issue to urea) but also dense protein
- then limit plant protein intake. Restrict it down until urea comes into range.
- if getting urea in spec means your protein intake is too restricted (i.e. less than 0.6gr/kg body weight per day, the absolute minimum protein intake level) then supplement with keto to get the equivalent of 0.6gr/kg body weight per day. I don't see why you can't supplement a bit more to be safe.
- beware of high protein plant food. If you have a protein budget and blow it on say, tofu, how are you going to hit your calorie intake for the day?? Most things have some protein so you'll find your overshooting protein budget by the time you hit your calorie target. I find that I usually can't have very much soy since its high protein for the few calories you get from it. If I do have it or an egg omlette or a Linda McCartney 1/4 pounder, then I have to be tight on protein for the rest of the day or next day to keep my average on target
- you also need to hit a balance with carbs/fat/protein in terms of how you get your calories.
I did nothing at stage 3a. Now that I'm down a the bottom of the barrel stage 3b, I'd advise that you:
- get labs and start looking critically at all metrics. No proteinuria is great, but what are you passing by way of protein? It must be something?
- Read Hull and start on the bones of what he say across the board - not just proteinuria or low protein diets. Perhaps leave the Albutrix if you've no urea issues yet. But get going whilst you've kidney capacity to burn.
If you live in the U.S. you are entitled to copies of your lab tests and all medical records any time your request them. Call the receptionist and ask to have a copy of your labs mailed to you. I'm not sure if that holds true in other countries. I've worked in physician's offices in the U.S. and know it's so here. Many medical facilities like Kaiser and Sutter Health email the patient results any time they have a lab test, x-ray etc. and email a copy of the Dr.'s notes for each visit. All you have to do is sign up with your email and it's automatic. I usually see my results before my Dr. does.
Thanks. I'll do that.
I totally agree. In the West where I am, Quest is a big lab, and they have a patient portal where you can make appts., etc., but most important to me is that I can access my lab reports any time I want. They are usually available in 5 business days, or less. I never wait to see my doctor! I'm too impatient. Just be careful not to overreact to results you may not fully understand. Even being experienced in reading and understanding most results, I recently had a bunch of tests done that I'd never heard of (protein light chains, etc.), and of course got the results on-line 5 days before seeing my dr. for f/u. There were a couple of Notes saying "consistent with", and when I Googled what the diseases meant, I freaked out. They were dire, at best. Longest 5 days of my life waiting to hear what my dr. had to say about it. First of all, she said not to worry if she didn't call me immediately. She would always call if something was way out of line. Then she reassured me that the "consistent with" was related to a combination of many factors, not all of which were outlined in the results. So I worried and cried for nothing. It won't stop me from looking at my results as soon as they become available nor Googling what they mean, but I won't jump to disastrous conclusions either. Just ask your lab for access to your online results, and/or ask them to snail-mail them to you. Sophiebun11 was spot-on...you're entitled to your results, you should look at them, try to understand them, and above all things, ask your doctor what they mean! As she said, most won't mention every single lab result, however if your doctor knows you're interested and tracking them, they will gladly discuss them with you. I had a PCP who reviewed each line of each lab result every time they were taken, and I appreciated it. I had to change providers due to changing insurance, but my new PCP also does that, as he knows I want to know. It's the patient's responsibility to manage their care, so it's up to you to let your doctors know that you're interested in the details, not just the overview. Trust me, if you express an interest in your own health, they will be glad to spend the time with you to make you a knowledgeable patient. It's easier for them to manage your care if you do, so it doesn't leave them guessing. I always mention the littlest things in case they mean something to them as part of the overall picture of my health. You never know when a small symptom in your eyes may mean something within the larger framework of your overall health issues and it may help them determine what's going on. If your doctor won't take the time, find another one. There are good doctors out there...you just need to find one. If you feel rushed, you're not getting the care you need, especially as your health declines, or you are diagnosed with things like kidney disease. Good Luck!
I agree with Sophiabun11...your doctor's office should give you your test results upon request. I use a popular testing lab (Quest) and can access my records on-line, usually within a day or 2 unless there are more specialized tests that require longer to come back, but they post results right away (I believe Lancer does as well). I also read my results immediately so I can ask my nephro or PCP on the next visit. I can't help myself! And I always immediately Google what the results mean...which can be misleading some times if you look at the "consistent with) rather than actual ratios, etc. I hope you can get them from your lab. Good luck.
Thanks, I did figure out how to get my labs.
Afaik, creatinine isn't toxic (in CKD type quantities). Its not like urea which is toxic and bad news. What's the cause of your CKD then? Any clue?
If you're asking me, the echo showed my kidneys have shrunk, maybe damaged by a high contrast dye from a few years ago that they warned me could fry my kidneys.
Good grief! "Warned you about"? I presume the procedure requiring the HCD was absolutely worth it. Or was it a case that deep frying your kidneys lay at the unlikely end of the risk spectrum.
I assume its very rare. I did feel cornered when the technicians warned me- I was already admitted for a procedure that required detailed blood vessel mapping and thought I knew the risks. I have had a number of high contrast dye tests, maybe they accumulate?? But my kidney doc looked at all my past blood tests and pinpointed that time as when the decline started. It could have been the procedure itself, though I wasn't warned about kidney damage as a risk of that.
Informed consent: having you read the small print when your sitting on a gurney waiting to be wheeled into theatre.
Good strategy if getting signed paperwork is your objective. Bloody Heck
Right. On the other hand, nobody even down to the drug companies, was up to anything but doing their jobs. Its an unfortunate side effect that's so slow to develop in humans that its probably very hard to tie kidney damage to the dye, even if you compared thousands of people who had the dye to thousands of people who didn't, there would be way too many confounding factors for a clear result. Unless there were some kind of subtle fingerprint, like a particular enzyme... Seems you go through life making the best decisions you can and sometimes the results are whacky for the good, sometimes for the bad.... Once I had a bad cold and had nothing to blow my nose on, so I sniffed, very hard, and wound up in the hospital with serious meningitis. Wacky good is if you meet somebody surprising or wind up some wonderful place
In my mum's experience, controlling urinary protein is key. Her serum creatinine and eGFR have been progressing well but protein eg 24h, has progressively worsened. Despite already minimising protein intake etc, we are considering Lee Hull and his book arrived a few days ago. Maybe it will reduce her serum urea which remains stubbonly ~50% over normal range max (only serum result of concern), asSkeptix states.
But personally I dont think many understand the protein issue - certainly not mum's nephro! My research indicates it's likely more of an issue for single kidney-ers as per my mum.
While not addressing the question of a single kidney, this link may help in understanding restricting protein intake due to both hyperfiltration and actual kidney cell damage due to excess protein intake in CKD patients who are non-diabetic and not on dialysis. It is from the NKF KDOQI clinical guidelines to physicians. This updated study and resulting much more extensive guidelines on diet and nutrition was published in 2020. The excerpt is as follows:
“Protein metabolism in the body is responsible for adequate growth in children and maintenance of body protein mass such as muscle mass in adults. Every day, approximately 250 g of protein are catabolized, leading to protein cata- bolic products such as urea and many other known or unidentified compounds. Most of these degradation products are normally cleared by the kidneys and excreted in urine. When kidney function declines, there will be an accumulation of these by-products into the blood, which will progressively impair organ function.144 This has been clearly identified for compounds such as p-cresyl sulfate, indoxyl sulfate, trimethyl aminoxide, and fibroblast growth factor 23 (FGF-23), which are now considered as uremic toxins. Second, protein intake is responsible for a major fraction of kidney workload, and much experi- mental and clinical research has confirmed the renal effects of a protein load and a deleterious role of the renal hyperfiltration response associated with protein intake. Therefore, in a situation of nephron reduction such as CKD, reducing protein intake will reduce hyperfiltration, with an additive effect to those of angiotensin-reducing drugs.144 As a consequence of both actions, reducing uremia and uremic toxins on one hand and improving renal hemodynamics on the other hand, a reduction in protein intake may reduce clinical symptoms and postpone the need to start maintenance dialysis treatment.”
The link to the entire 117 page document is below:
ajkd.org/article/S0272-6386...
The quote is from page S43 under the heading for “Guideline 3 Protein and Energy Intake” under the section titled “Rational/Background.”
Sorry if I am off-base or misunderstood but it is well documented that protein intake if not restricted will lead to more dead kidney cells. Maybe it’ll help?
I hadn't read that far - like the Bible, I made the mistake of starting at the beginning and falling asleep with boredom by the time I got to Numbers!
Great info / intro to the mechanism of protein impact. I only understood urea amd nothing else.
As you said, a lot of questions askable are answered by that paper.
Dude the first couple of chapters can keep your interest but like Leviticus as you get into the middle sections (I.e. Kings) it is easy to get bogged down…especially if you are using the KJV or the NKJV…lol! (Please forgive me, I am not making fun of The Word…just my lack of knowledge and sometimes commitment to power through!). Very similar to reading physicians guidelines. I have been in the hospital, have enough comorbid conditions, and done enough research to keep up with about a third of it. Specifically this jelly like information on our disease that has so few unchanging guidelines!
Indeed. The guidelines have the look of something designed by a committee.
Hey, wait up: they were designed by a committee!!
I think you have to read between the lines. And develop your own understanding of the mechanisms at work to see if you think the intervention makes sense.
At the end of the day, we are in embryonic territory, medics included. It's always going to be a punt. In 100 years they'll look back at this forum and see what we're doing as on a par with bloodletting
"Every day, approximately 250 g of protein are catabolized, leading to protein cata- bolic products such as urea and many other known or unidentified compounds."
Huh? Protein is broken down and produces amino acids and waste products. The protein is no more. From where does 250g protein come from every day. The population isn't ingesting that amount of protein?
Here is a quote from an article that discusses protein catabolism:“ amino acids are recycled to make new proteins. All cells in the body continually break down proteins and build new ones, a process referred to as protein turnover. Every day over 250 grams of protein in your body are dismantled and 250 grams of new protein are built. To form these new proteins, amino acids from food and those from protein destruction are placed into a “pool.” Though it is not a literal pool, when an amino acid is required to build another protein it can be acquired from the additional amino acids that exist within the body”
Here is the link to the article:
med.libretexts.org/Courses/...
Ta v. much. Righto: so proteins, unlike energy, can be created as well as destroyed. That's a new one for me.
I suppose the bottom line is that there can only be so much waste product attaching to the protein ingested - however long it takes for that waste to be produced from the protein ingested.
And so: protein restricted diet to control protein waste.
But since your body destroys 250 g of protein every day, if you are eating a low protein diet (I eat30 g of plant protein/day) then when your body needs protein to rebuild it may not have enough protein available and you go into PEW -protein energy wasting phase. On the low plant protein diet my BUN dropped from 13 mg/dL to 7 in a two month period. I tried Albutrix but I think I need to try Ketorena? The Albutrix was making me feel ill. In the same two month period my eGFR went from 50 to 47.
CKD is a constant mental challenge.
Your last sentence…Ain’t that the damn truth!It is an enigma wrapped in a conundrum and locked in for VP Al Gore’s “Locked Box,”
I don't see why PEW. Certainly nobody is eating 250gr a day and the body is recycling. The question is: how much to we need to add to the pool (and some protein goes into energy supply). The powers that be seem to have figured on 0.6gr/body weight each day.
I'm doing 30 diet and 20 keto to give me 0.8gr/kg overall. The 30gr represents 0.46g/kg which is only a tad over the 0.43gr/kg defined as a very low protein diet requiring of supplementation.
There is no need to suppose PEW from a 0.6gr+ diet is there?
Re: Albutrix. Another poster (luvdogs or something) reported having a very bad reaction to Albutrix. Now, (s)he had a washlist of conditions such that overdoing salt would stop his/here heart.
I've had a proctitis (i.e. red raw asshole and beyond) flare (I've only had a couple in the last 18 years). This aligned with starting a pbd +keto 4 months ago. A couple of days ago I decided to take a break from the keto for a couple of weeks and see what happens. I suspect the flare was triggered by the vast quantities of fruit I was consuming (fruit set it off before). But you change what's correlated with the flare and see
eGFR is going to hop around the place so a few points wouldn't cause me to jump. By knocking urea you've improved your lot over not knocking it. It may take time for improvement in creatinine (eGFR) if any at all. What about cholesterol: plant ought to have put a dent in that I'd imagine.
I haven’t had a lipid profile done since I started the plant based low protein diet. I am scheduled for a test next month - but my cholsterol level has been high for many years. I won’t take statins. Hopefully the vegan diet will help in lowering my LDL and triglicerides and raising my HDL.
Plant based had an immediate (well after 3 months) effect on my cholesterol: 6.6 to 5.2. LDL went down a good chunk (and into range). 《5.0 is the overall target in Ireland but I'll imagine I'll hit that by next bloods (which I'm having taken today as it happens.
I read somewhere that for CKDers, a lower target is desirable- 4.5 or something but have to search that down again.
I said, "I had to be sure to take in enough salt, or my heart would go into severe arrythmia." That is due to nephrogenic diabetes insipidus, and in that condition virtually all the fluids you take in go straight through, and salt & potassium are washed out of the body.
The Albutrix made me feel more ill every day I took it. At 17 days I really felt like I was dying, so I quit it and improved. I tried it again at two tablets a day, two days in a row, and again became very ill. About a week after that I learned that while taking Albutrix and following the plan, I had gone dangerously alkaline, to the point I (WAS) facing dying. This has been so devastating, and depressing. I had such high hopes for extending my life with Albutrix, and instead almost lost it. Now I face that I likely won't live that long. I am stage 3b, but getting so ill with Alkalosis really tanked me. I have had to work at making my body more acidic in order to recover. I am going to check into vegan keto, or at least vegan low carb. But, until I get things worked out I am eating animal protein again. I do not have protein in my urine... Since without Albutrix I have a very difficult time getting my protein levels high enough before I max out my calories, I am not concerned about the level of protein that Tofu gives me.
Yes I had high hopes for Albutrix too. Like you I was concerned about how Albutrix is manufactured and what it contains. The Nutritional Information on the label says each tablet is “5 grams of dietary protein” and “ This is an estimate for dietary planning. Amino acid contents vary by food source.” Why doesn’t the label provide the food source that the amino acids are derived from? It is hard for me to understand how a 2.5 gram tablet can contain 5 grams of protein?
We all process food according to our digestive system, gut biome and our genetic code. Each of us is different and may have differing reactions to the foods and supplements we ingest. I am lactose intolerant, gluten intolerant and solanan intolerant- I really need to know what ingredients are in the foods and supplements that I eat. But Ketorena’s label does not provide any more information than the Albutrix label - so I’ll have to get my plant protein from sources that I know won’t harm my digestive system or kidneys when I eat them.
My Medicare HMO does not refer patients to a Nephrologist until your eGFR is below 35. There is no Renal Dietitian on staff. My PCP follows the HMO insurance guidelines with regards to testing - so I only get tested twice a year unless I am in a dire health emergency. To monitor my eGFR levels I pay for extra testing though Walkinlabs. I am so glad that I found this forum. There is a lot of good information here, and everyone is doing their best to maintain their health with the help of the friends they’ve made here. I wish you well on your kidney health journey - it looks like you are being proactive to find what works for you.
From everything I can calculate the reason they do not provide the food source that the amino acids are derived from is because the amino acids are chemically sourced. I do not know this for sure, but in my research that is all I can come up with. Like they would take each amino acid (from something) and process it numerous times to refine it. It is refined down to a chemical level. Lets just compare it to a natural vs a chemical statin. A herbal based statin will do far less harm, even though it too lowers cholesterol, but the whole plant has a number of factors that 'balance' things out. But, a chemical statin drug is strictly a chemical, and does a LOT of harm. The same can be said of fish oil: in natural form is does wonders, but the new fish oil prescriptions has essentially been made into a chemical, and does not have the same effect on the body. And, that is what I think of these proteins that have been processed in so many steps they are now a chemical. By the way, the vitamin supplement that comes with the bottle of Albutrix, also makes me very ill. It too is so highly processed it is a 'chemical'.
Strange that I would read this string today...had a f/u with my cardiologist this morning and he brought up the difference between OTC Fish Oil caps vs. natural that you get from actual fish. First I've heard of this issue, and both within 8 hrs! His advice was to eat foods in their most natural state, i.e. a fish from the ocean vs. fish oil caps, items as close to their natural environment state, i.e. straight from the ground, etc. He also is beginning to challenge the thought that cholesterol levels according to "The Guideline" isn't the best measure of cardiac health, but instead the levels of plaque. New to me...I thought the cholesterol numbers were the "bible" (intentionally not capitalized!). Thus he's ordered carotid artery ultrasound and lower leg Dopplar ultrasound. This has nothing to do with my Stage 3b CKD, but odd that the fish oil issue came up twice the same day! Good health everyone, and thank you all for sharing your journey...it helps to read what others are going through, doing for treatment, dietary changes, etc. Great community...thank you!
Red a book by an English GP called "The Great Cholesterol Myth" or some such, a few years back. He called the serum cholesterol gig a load of bunk. His contention was that cholesterol under plaque wasn't a function of cholesterol in plasma.
The everyman understanding was of sticky cholesterol floating around in your blood and sticking to vessel walls and building up until the vessels blocked.
But, he pointed out, cholesterol cannot get from the blood through the plaque!
Which specific lab tests do you order, and about how much does it cost?
With Walkinlabs you can have your blood drawn either at LabCorp or Quest Diagnostics. I have always had my blood drawn at Labcorp because they have a lab/clinic close to my home. The test I usually get is the “CMP-14 with eGFR” (Comprehensive metabolic panel with 14 results). it costs $33 at Labcorp but once you become a patient they send you email notifications of sale pricing and usually I purchase my tests when they are offering a 15% discount. I also sometimes get the Lipid Panel with Total cholesterol/ HDL ratio which costs $39 and also buy when the 15% discount is being offered. They have always emailed me a notification that my test results are ready the morning following my blood draw. You access your results on their website but can download the results to your computer or print them on your printer. The test results show a comparison of the new results with your most recent previous test results. The Labcorp clinic is clean and I have never had to wait more than 10 minutes to have my blood drawn. You can make an appointment or walk in at your convenience.
Sad that neither of those places are available in our area. : - (... I will see if Life Extension offers those tests, and if the pricing is comparable.
My results don't come with costs, but I get monthly insurance summaries that show what the cost was and what ins. paid. I haven't had an out-of-pocket charge for years. Sorry that your insurance won't cover routine tests. If you like, I can look up my 2 most recent tests and give you a list of what was done...one was fairly general stuff as mentioned, and the other 2 months ago was CKD-specific as ordered by my nephrologist, as well as their cost. I agree that LabCorp and Quest Diagnostics are the 2 largest labs here in Vegas (used LabCorp in CA)...I have a Quest a half mile from home so always go there. By making an on-line appt., there's virtually no wait time...5-10mins max. Can run long if you go in without an appt. A side note...strange that pre-Covid, appointments weren't available for at least 3 weeks out...post-Covid, you can get next-day appts.! Maybe switching to the on-line appt. scheduling has helped streamline their processes. P.S. My nephrologist is seeing me every 3 mo. and requires labs prior to each appt. (Stage 3b CKD).
I haven't the link to hand but Albutrix is being patented and you can find the patent application on line. It has all the detail as to constituents and the like.
I too had that question about a pill not weighing anywhere near 5gr giving you 5gr of protein.
I read up and it appears keto analogues (which is what protein is broken down into for the body to use) are but a tiny fraction of the protein itself. So if ingesting the keto direct, it doesn't have to weigh anything like the amount of protein it substitutes for. For example: protein, we know, is part made up of what eventually turns up as uremic toxins in our blood. So a protein substitute (e.g. Albutrix) devoid of urea-destined elements is going to weigh less than the equivalent dietary
protein.
Dunno if Ketorena would be worth a spin. It's about the same price as Albutrix and has a PhD RD designing/fronting it.
Please check with your physician before taking any over the counter supplements. They should all be cleared with your healthcare provider to make sure that they are safe for you to take.
Generally speaking I would Marissa, but in the case of keto acids there's a certain amount of rock and hard place about it.
- The whole very low protein supplemented diet gig is so "hot off the press" it hasn't trickled down to be a consideration for the rather slow moving machinery of clinical practice
- there are no pharma-grade keto acid analogues available on the market and few doc's is going to okay the relative unknown that is Ketorena/Albutrix.
My nephrologists reaction to my unilaterally going on a sVLPD was to obtain me the services of an RD - a near impossibility in my country! Initially enthusiastic, they've indicated a bit of cooling off on the idea having realised they have no insight into "bought off the web" supplements central to the NKF-recommended regime.
Upshot:
I either don't go on a supplemented very low protein diet (which would appear to be kidney detrimental) or I do (and take a punt on my health). And there's no one able or willing to decide for me, other than me, unfortunately.
But I agree that everyone should at least run things by their doc in the first instance and decide what to do in response to that. I'll ensure to make that recommendation in anything I myself have to say on this subject in future.
If you read the fine print on the ketorena website, it provides 5G of protein equivalent per "serving", and claims that's all you need, whereas Albutrix provides 30G of protein equivalent per "serving" (5G per pill), which is a better value moneywise and in keeping with research, which says to restrict dietary protein to about 30G (depending on your size) but to get at least 60G total, for the best health/longest life. Plant protein still has nitrogen in it, which is what is converted to Urea.
Please be sure to notify your doctor about this, if you haven't already.
My doctor is worthless. Even when my labs suck she lies and says they are fine, then she is out the door without answering any questions, and I get the lab sheets from the nurse, which shows I am in real crisis with my kidneys. But, my doctor has told me to "set my next appointment for a year and a day per Medicare guidelines". -- And, earlier when I had been to my GP, he seen my sodium had tanked. So, instead of telling me to add a bit of sodium, he told me to cut my water from 7 quarts a day to 2 quarts a day. I did follow his rules for about 20 hours, at which time I was so dehydrated I was so dizzy I could hardly walk, and at that point I knew better than to continue following my GP's orders being I have Diabetes Insipidus. If I had continued to follow the GP;s orders I would have died in the 2 weeks till my appointment with the neph for retesting. I would have died of full on kidney failure from dehydration, skyrocking sodium and skyrocking potassium. Either my GP is totally incompetent or he had zero regard for my life. As it is I only cut to 5 quarts a day for the 2 weeks before that neph appointment, and even then my GFR had gone down 6 points due to the dehydration. So, at that point my neph set my last appointment for 2 months later. And, now, even though my labs totally suck, she says "come back in a year and a day". Course, neither doctor was happy that I just chose to disregard a doctors orders. But, as I told my neph (after I explained what only 20 hours of following the GP's orders had done to me), "That I was the one going to pay the price for following his orders. I was the one who was going to die if I followed his orders."
US measurements is one of those things I've never gotten the hang of. I googled a "quart" and it comes out at just about 1 litre. Your doc said to cut your water to 2 litres a day from 7 litres a day
You were drinking 7 litres of water a day?? Good grief - how on earth can you consume that amount of water? My RD figured my not drinking any water at all could be improved upon and set me the task of 1.5 litres a day with the aim of rising to 2 litres! I struggle to get a litre and a half of the disgusting stuff down a day (and that by 7pm, otherwise I'm up all through the night pee-ing)
I have nephrogenic diabetes insipidus, which means my kidney do not get the message to hold onto any of the water I drink. It all just goes straight through in about 20 minutes UNLESS I drink so much that my body is forced to retain some of it. At a routine 4 quarts a day I passed out once in 2011 and ended up in the hospital for severe dehydration. In 2016 I was drinking 5 quarts a day when I was sent to the neph for dehydration. My kidney function was tanking even drinking 5 quarts of water a day. So, she told me, "You are in crisis with your kidneys. Start 'pushing' water. And, start adding more salt to your days." Some days I even drink more than 7 quarts a day. With drinking this much water my salt is washed out, so I have to take in more salt than usual. Thankfully it also kept my potassium levels down, but with the vegan diet those have been rising. How do I drink that much? IT. IS. A. JOB. If I get busy doing stuff, and don't drink enough during the day, then I get very dizzy, and I get massive headaches. Oh, I also have to drink a liter of water during the night (as part of that 7 quarts). My neph has told me it would be dangerous for me to even have surgery, not just because of my heart failure, but because I would not be drinking water during that time, and it would be dangerous for my kidneys. It often sucks to drink this much water, but then on the other hand I count is a blessing. If I have to have kidney disease, then at least having to drink this much water gives me more freedom concerning salt and potassium. Gotta look for the silver linings where we can find them...
Yes I have 30 which is not proteinuria i
PS only if you know what type of KD you have it isn't going to help even if you are not eating meat. Also any CKD patient shout ask a dietician before changing your diet because it will cause more problems such as Anemia and B12 deficiency which increase risk of death. I have never cut out anything but have managed to increase my egfr from Lower 3b to 5 more to a clinically normal . So the trick isn't supplements but to concentrate on heart health and not just worry about the kidney yet because 99.99% of CKD patients do not die from kidney insufficiency but heart attack. Stress is the number 1 issue most of us have so tackle that or diabetes high blood pressure first before attempting to hack the kidneys. Of course quit smoking alcohol and unnecessary drugs including weed pain killers etc. Drinking enough water but not over it is harmful to your brains heart lungs and makes your kidney work over drive. Meditate exercise and find happiness. Btw I have a rare tumor that caused kidneys to weaken and it is known to go to end stage irregardless of exercise medicines or diet so please talk to your Dr before doing anything.
Vegans don't appear to be dropping like flies, my vegan nephew over yesterday for dinner telling me: "yeah I supplement iron and B12".
Adulteration of meats takes this form, on a sliding scale of level of adulteration: chicken, pork, beef, lamb, fish (unfarmed, forget farmed). That from the mouth of a colleague concerned with such thing when we worked for the 2nd biggest protein producer in the world. Protein isn't raised ... the industry expression is "grown". And boy, they will do everything they can to make that precious material grooooow.
The trouble with waiting for the docs is that there's a very good chance they aren't up to speed on best approach. Certainly not your pcp and probably not your nephr.
Whatever about the rare tumor and the damage it will cause, the damage it causes will itself cause it's own damage. For example: the tumor damaging the kidney such that the kidney cannot filter urea will bring damage due to elevated serum urea. Double whammy.
You might not be able to alter the 1st problem, but perhaps the 2nd .. is the idea
I truly believe the vegan diet is wonderful. I did it a few years ago, and did well on it until my albumin got low. My mother lived on it most of her life, with meat only on rare occasions, and she lived to 89 years old. However, when I recently went vegan with Albutrix, this vegan almost died. I am still trying to recover physically.
Please consult with your doctor before making any changes to your diet. Please also be sure to alert your physician if you have taken any over the counter supplements as they should know and inform you if they are safe to take or not.
Do you know why vegan with Albutrix almost killed you? I've only heard success stories about it.
I think it was a serious allergy reaction to Albutrix. My doctor would term it "anaphalactic". I do not think it was the vegan diet that caused harm, cause I am still eating little animal protein now that I am off Albutrix, and still am eating mostly plants. I am still not recovered from using Albutrix. Such a long-term allergic reaction caused me serious health damage, particularly worsening my heart failure. The last while has been particularly scary, and this started when I was on Albutrix. I am improving, but still wonder day to day if today is my last day. I think if I can work through this over the next couple of weeks, then things could be looking up with my heart, but my kidney function is DOWN. I am experiencing swelling in the ankles like I have never had before, and my fingers are swelling. The severe nausea began when I was taking Albutrix, and it has let up quite a bit, but still goes on. I wish I had just gone vegetarian and got my protein from plants.
I'm shocked that it was so bad for you. Didn't know there were allergens in Albutrix. I hope you do continue to feel better.
I'm not sure there are allergens in Albutrix (in the sense: gluten, celery, shellfish, etc). As LuvSmallDogs herself said, some people are allergic to water. Water is for them an "allergen", without water being an allergen .. if you know what I mean
Since Lee Hull is somewhat accessible, I wonder what he'd say about such an awful reaction to his product.
Given the amount of times he states that a person ought to seek the guidance of their doctor regarding embarking on anything he says, I'd imagine somewhere in amongst his questions would be "what did your doctor say about your embarking on Albutrix"
Now, although I would evaluate Lee as having a genuine interest in peoples welfare, he lives in the US and comes across as a realist. I suspect that the "consult your doctor first" bit has two components:
- avoiding/mitigating litigation. LuvSmallDogs said herself that some people are allergic to water. One take on that is that LSD's reaction as influenced more by the various complex, serious medical issues they've talked about here and less by the constituents of Albutrix itself. I dunno. Hull cannot (no more that Pellegrino can) foresee all eventualities and so covers himself for those eventualities by the simple expediency of kicking it into the doctors court.
- a genuine concern for the patient. Again he has no control over them and you could get people going off completely half-baked on what is a significant dietary intervention.
I'd imagine he'd be interested in finding out what went on. It is not in his interest that folk have such reactions to his product. Like, there is Trustpilot and other places for folk to air their views.
Per your last paragraph... as long as he is in a defensive stance there is no use talking to him. My condition is still extremely fragile and I don't need the stress of his real interest being in defending his product instead of actually hearing what I went through. I do understand his stance, but it is not a helpful one. I do not 'blame' his product per 'se. As I've said repeatedly, anyone can have an anaphylactic reaction to anything. To discount that anyone could have such a reaction to Albutrix "cause it isn't eggs, dairy, et c, etc," is fool -hardy. Just going by the taste you can tell it's not nothing. Plainly, by the taste, common sense says that some persons could have a reaction. It tastes like chemicals. It actually contains some of the same chemicals as Miralax. And people have had, and do have reactions to Miralax.
I wasn't aware that he had a defensive stance. You were to describe to him the situation as I recall. And there was a question about whether a refund or not - I don't know how that's progressing. I guessed he would far from refuse that
I'm not 'after' you. Rather, the specifics matter and they often aren't communicated. You've said 'chemicals' many times but don't say what they are. If they are merely the kinds of things you get in any pill (binding agents to stick the powder together or coatings to prevent oxidation the "yes, chemicals but so what?)
You make it sound like this is some kind of Frankenpill as opposed to something fairly run off the mill.
Taste? Taste raw salt and tell me whether that doesn't come across as a chemical (which it is)
I got the refund after I put in a 'dispute' on my credit card.
Polyvinyl Alcohol (is a chemical)
honest.com/blog/wellness/in...
Polyethylene glycol (is a chemical).
Polyethylene glycol is widely used as an additive in pharmaceuticals, cosmetics and food.
Polyethylene glycol as a cause of anaphylaxis
aacijournal.biomedcentral.c...
And, the amino acids are so processed can we even call them anything but a chemical now?
Here is one of many articles discussing the rare condition of being allergic to water.
Anything that has a possible benefit also has the power to do harm, as in a reaction. I have been dealing with the complexities of nephrogenic diabetes insipidus, CKD, and heart failure for years. I have had anaphylactic reactions before that wiped out keeping my conditions stabl e. I t is an extreme balancing act keeping all these conditions stable, but I was doing so until I had the reaction to Albutrix. I should have realized earlier that my reaction was due to the Albutrix, and stopped it sooner, but I was solely going by what I read in his book, and knew that without the Albutrix I would not get enough protein from his suggested diet. Mind you, I have previously asked my nephrologist for guidance and the only guidance I was given was, "Just eat a healthy diet."
My doctor said the Mediterranean diet when I pressed. Balancing your conditions does sound tricky. I have lupus where my immune system attacks a random organ at what seem like random times which is the only remotely similar thing, but its usually treatable with high dose steroids, (which are hard on the heart and sleeping). Thanks for the link about the water allergy, that was interesting.
I really hate to be a jerk, so I won’t be. But please, 99.99% don’t die from Renal failure but from heart attacks? Don’t throw out misleading information like that, additionally if you want to quote statistics and mortality rate etc, link please as others do. Nearly 4000 ESRD patients die waiting for a kidney yearly.
If you want to split hairs, death certificate may read cardio-pulmonary failure due to ESRD and renal failure. However, please see the quote and link below to understand that to throw around misleading and incorrect information that is not based in fact is dangerous for the initially diagnosed, those seeking support and not specific details and those who (unfortunately) have not become their own best advocate by education and research.
“Mortality
The mortality rates associated with CKD are striking. After adjustment for age, gender, race, comorbidity, and prior hospitalizations, mortality in patients with CKD in 2009 was 56% greater than that in patients without CKD. [28] For patients with stages 4-5 CKD, the adjusted mortality rate is 76% greater.
Mortality rates are consistently higher for men than for women, and for black persons than for white individuals and patients of other races. For Medicare CKD patients aged 66 years and older, deaths per 1000 patient-years in 2009 were 75 for white patients and 83 for black patients. [28]
The highest mortality rate is within the first 6 months of initiating dialysis. Mortality then tends to improve over the next 6 months, before increasing gradually over the next 4 years. The 5-year survival rate for a patient undergoing long-term dialysis in the United States is approximately 35%, and approximately 25% in patients with diabetes.
A study by Sens found that the risk of mortality was elevated in patients with ESRD and congestive heart failure who received peritoneal dialysis compared with those who received hemodialysis. [33] Median survival time was 20.4 months in patients receiving peritoneal dialysis versus 36.7 months in the hemodialysis group.
At every age, patients with ESRD on dialysis have significantly increased mortality when compared with nondialysis patients and individuals without kidney disease. At age 60 years, a healthy person can expect to live for more than 20 years, whereas the life expectancy of a patient aged 60 years who is starting hemodialysis is closer to 4 years. Among patients aged 65 years or older who have ESRD, mortality rates are 6 times higher than in the general population. [28]
The most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion.
The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population. [34]
The morbidity and mortality of dialysis patients is much higher in the United States than in most other countries, which is probably a consequence of selection bias. Because of liberal criteria for receiving government-funded dialysis in the United States and the use of rationing (medical and economic) in most other countries, US patients receiving dialysis are on the average older and sicker than those in other countries.
In the National Health and Nutrition Examination Survey (NHANES) III prevalence study, hypoalbuminemia (a marker of protein-energy malnutrition and a powerful predictive marker of mortality in dialysis patients, as well as in the general population) was independently associated with low bicarbonate, as well as with the inflammatory marker C-reactive protein. A study by Raphael et al suggests that higher serum bicarbonate levels are associated with better survival and renal outcomes in African Americans. [35]
A study by Navaneethan et al found a connection between low levels of 25-hydroxyvitamin D (25[OH]D) and all-cause mortality in patients with nondialysis CKD. [36] Adjusted risk of mortality was 33% higher in patients whose 25(OH)D levels were below 15 ng/mL.
Morbidity and mortality among children with CKD and ESRD are much lower than among adults with these conditions, but they are strikingly higher than for healthy children. As with adults, the risk is highest among dialysis patients; consequently, transplantation is the preferred treatment for pediatric patients with ESRD.
Link:
emedicine.medscape.com/arti...
Statement on B complex, folic acid, B6 and B12 from NKF KDOQI GUIDELINES FOR PHYSICIANS
5.1 Statements on Folic Acid
Folic Acid Supplementation for Hyperhomocysteinemia
5.1.1
In adults with CKD 3-5D or posttransplantation who have hyperhomocysteinemia associated with kidney disease, we recommend not to routinely supplement folate with or without B-complex since there is no evidence demonstrating reduction in adverse cardiovascular outcomes (1A).
Folic Acid Supplementation for Folic Acid Deficiency and Insufficiency
5.1.2
In adults with CKD 1-5D (2B) or posttransplantation (OPINION), we suggest prescribing folate, vitamin B12, and/or B-complex supplement to correct for folate or vitamin B12 deficiency/insufficiency based on clinical signs and symptoms (2B).
Rationale/Background
Folic acid is involved in the synthesis of several amino acids, including serine, glycine, methionine, and histidine. Folic acid can be provided by dietary sources as well as over-the- counter nutritional supplements. Over-the-counter supplements come in various forms, such as folic acid, methyl folate (also known as l-methyl folate, l-5-methyl folate, or MTHF), and folinic acid, among others. Folic acid’s primary mechanism of action is its role as a 1-carbon donor. Folic acid is reduced to methyl folate, which helps transfer single methyl groups in various metabolic reactions in the body. Folic acid also plays a role in the functioning of the nervous system, in DNA synthesis, and in cell division. Food sources rich in folic acid include green leafy vegetables, fruits, yeast, and liver. Although intake of foods naturally rich in folic acid is limited in patients with CKD due to their high potassium content, folic acid deficiency among this patient population seems to be rare. This is especially true since 1996, when folic acid fortification of enriched cereal grain products was mandated in the United States and Canada.301 Because folate, vitamin B12, and vitamin B6 assist in the conversion of homocysteine to methionine (and thereby reduce serum homocysteine levels), they have received considerable attention as a putative treatment for CVD in patients with CKD.
Detailed Justification
Mortality, Cardiovascular Outcomes, and Vascular Function
Four RCTs did not show any effect of folic acid when taken with vitamins B6 and B12 on hard outcomes, including all-cause mortality and/or cardiovascular events in patients with stage 5 CKD, receiving MHD or PD, and posttransplant.304, 305, 306, 307 Folic acid and other B-vitamin supplementation ranged from 2.5 to 40 mg/d of folic acid, 1.4 to 100 mg/d of vitamin B6, and 150 μg/wk to 2 mg/d of vitamin B12 for a duration of 2 to 5 years.
Folic acid (alone) intake of 1 to 5 mg/d for 4 to 40 weeks showed no effect on flow-mediated dilation.308,309 Additionally, folic acid supplementation did not alter the risk for cardiovascular outcomes in 4 RCTs.310, 311, 312, 313 The 4 RCTs included patients with CKD, stage 5 nondialyzed, and treated by PD and MHD. The folic acid supplementation dose ranged from 1 to 15 mg/d and supplementation duration ranged from 1 to 3.6 years in these studies.
Supplementation with folic acid in combination with other B vitamins did not improve TC levels, intima media thickness, or BP in MHD patients. Doses ranged from 5 to 15 mg of folic acid and a B-complex vitamin for 3 to 6 months.314,315
Link:
ajkd.org/article/S0272-6386...
Really I don’t mean to be a jerk but so many with such absolutes that will solve or “cure” CKD. I have been stage 4 since 1996 and for those of us who research medical evidence there are very few “absolutes” or “constants” regards CKD.
No doubt there is a link between CKD and CVD and the NIIH has a separate site dedicated to the link between CKD and CVD but when you read that site which is the CRIC and has been in a three phase trial study since 2008 the research seems to indicate that CKD is the underlying problem for premature mortality due to all cardiovascular events.
Link:
cristudy.org/Chronic-Kidney...
I really hope I didn’t offend but let’s be sensitive to what we say without support. Thanks!
I totally agree. My CKD is from autoimmune disease attacking my kidneys so diet won't be enough and my Neph expects I'll decline rapidly now that I'm in Stage 4. I hope he was being a bit dramatic, but we'll see. Good luck to you.
Hi Sophiebun11. I have lupus so I'm familiar at least with that kind of autoimmune. I know that your doctor ought to be careful about raining on your expectations instead of all-out preparing you for the worst. Plant-based low protein diets have helped a lot of people on this site. My diet is so anti-inflammatory now that I'm feeling real good. For me, dark thoughts are super inflammatory.
I'm so confused about which "diet" is best. I was already told last year to do a low-residue diet due severe gastroparesis & dysphagia, and a couple of months ago my new nephrologist added low-potassium, due to hyperkalemia (also added Lokelma & Furosemide). I have Stage 3b CKD, but also the auto-immune disease Sarcoidosis. Trying to figure out the balance of those 2 prescribed diets, plus anti-inflammatory, I'm so confused! Now all the talk about low-protein adds another dimension. I'm pending a referral to a nutritionist/dietician. Is it just me, or is this all confusing for fairly newly diagnosed CKD patients? I was first ref'd to a nephro 2 yrs ago...he said Stage 3 but said come back in a year and did nothing but a set of regular labs. Thankfully I had a good PCP who monitored my labs 2-3 times/yr and said it was time to see a nephro. Got a good one and rec'd the confirmed diagnosis of 3b. Thanks for all the "talk" about low-protein...something I'll have to monitor and get to know better. eGFR 34 and holding. Thanks everybody for participating! Good health to you.
Thanks, whats, for sharing that. I have Scleroderma which is similar to Lupus as you know. In fact, I was initially diagnosed with Lupus in my 20s. Not many Dr. had even heard of Scleroderma. I have done the anti-inflammatory diet for my Sclero for decades. Occasionally I'll have a potato, tomato, or some night shade food and OMG my joints would be so swollen and aching for weeks giving me a flare up. I learned to be fairly diligent about diet as well. I'm sure you must be too. Luckily I became a vegetarian at the age of 10 and went back and forth between vegan and veggie since then. It really makes a different.
My new Neph. put me back on low dose Prednisone for my kidney inflammation which I don't know if it's helping that but it sure is helping all my Sclero pains. Now if only I could sleep when I'm taking it and didn't have this increased appetite. I could stand to gain a few pounds, when it's not pure fluid retention : )
I figure the Neph would be negligent if he didn't warn me about Sclero and the odds of rapid progression. I don't think he was being negative, he actually has a great sense of humor and is pretty positive. I enjoyed the visit with him. Humor helps everything. My oncologist is a laugh riot, I think it helps him cope. They are of course more serious with a serious personality patient. I worked with a group of cardiologists and the funniest among them would still be somber with the negative minded patients as appropriate. I will be seeing a Cardiologist in 2 weeks for CKD related cardiac issues. It will be strange to be on the other side of the exam. I've probably forgotten as much as I knew, particularly since this darn CKD is now affecting my memory as well.
Happy that you know what you're doing. I've been taking 5mg prednisone for so long I wonder if my body had adapted to it. (Much more for a flare). I do have trouble sleeping though, especially since I have to get up more to go to the bathroom. This all vegan diet is new for me though and really helpful. Plus everybody wearing masks, as minor infections are a big flare trigger.
I suppose the hope is that diet can alter the bodies propensity to attack itself. I can't remember the content of the chapter but the title of that early segment in Hull's book is 'why is my body trying to evict my kidneys'
A lot of what Hull says is grounded in solid science but I don't if this conclusion of his is: if you've things out of spec in your body: blood markers, inflammation and stuff, that can be a reason for your body to try and evict your kidneys.
I'd give him a read if you haven't already. He might be wrong on this particular hypothesis but he's pretty bang on a lot of stuff so might just be right here.
(Google Allen Carr and Easy way to Stop Smoking. A guy (former accountant) who discovered the key to unlocking the smoking trap, freeing millions in the process. His book gets 5000 or so 4.5 stars on Amazon. Me and my whole family and friends around were freed from smoking by a single copy of his book that did the rounds. Poo for brains here fell back into the trap smoking weed (which uses tobacco to help keep the weed burning) but escaped again with the book)
It is possible for a smart/blessed/lucky lay person to outsmart the professional paradigm.
And Carr is proof positive that even after many years, the physicians won't come into alignment with him. They still push using the drug to free you from the drug method (NRT)
In the U.S. physicians have been touting plant based diets for diseases from autoimmune diseases, cardiac diseases, type 2 diabetes, and many other things for decades. I don't think it's anything new. I supposed some PCPs don't bring up diet, but all of my specialists have and I've been seeing a Rheumatologist for my autoimmune disease since I was in my mid-20s. An anti-inflammatory is the primary treatment of inflammation along with anti-inflammatory meds like Prednisone. I've been a vegetarian since age 10 and have watched out for veggies that cause inflammation like potato, tomato, eggplant, etc. since my 20s. I do have the occasional splurge on potato chips and boy do I pay with inflammation and pain. Luckily my potassium is below normal so I can get away with eating it from time to time. I should eat more. The renal dietician said 3 times a week for potassium veggies is fine since I need to increase it without straining my kidney's work.
Luckily I'm not a smoker so I don't have to deal with stopping that habit. I smoked in my late teens and early 20s. Then I got pneumonia and couldn't breathe in the hospital. Once I got out and got home I took my cigarettes and almost lit one. Then I scolded myself that I was nuts to start again. I hadn't had one in 2 weeks so the worst part of the withdrawal was over. I still keep that last pack of cigs in my fridge to remind me. Getting pneumonia was the luckiest thing that happened to me on that count, not so good for my asthma though LOL I don't drink either since alcohol triggers my migraines. I quit drinking at 25 y/o, I got in plenty before then LOL. I've lived a pretty clean and green life yet my autoimmune disease, which is genetic, has a course of it's own mapped out for me. I keep fighting it though. I'm still waiting to see what the Neph. and Rheum. decide about starting me on CellCept. That might be my best best. Or maybe the Prednisone is helping since my last labs, I'm getting more blood work for the Neph and Oncologist today. I dropped 5pts on my eGFR from May to Aug. I'm hoping I didn't drop anymore since Aug. The closer I stay to the top of Stage 4 the better.
I got the Lee Hull book. I've only read the covers, the chapter names and half of the intro. The print is too small for me, I ordered a pair of reading glasses and then I'll dive into the main body of the book. No sense straining my eyes and my brain. Amazon should deliver them today or maybe it's Friday.
I'll let you know how I liked the book after I plow through it. I wish it was on CD so I could listen. I ordered a couple other kidney books on CD. If they are worth a read or listen I'll post about them.
WYOAnneNKF Ambassador
FYI: There has been a lot of controversy regarding Lee Hull's book. I would take his advice with a grain of salt. No one person seems to have a cure for kidney disease. Once damage is done, it can not be reversed.That being said, many on this site have been able to stabilize their CKD with a kidney friendly diet. Before starting any kind of kidney friendly diet, I would take your lab results and go see a renal dietician. Get your doctor's office to print out your results. We are all different and what works for me, may not work for you. That is why any diet should be prescribed just for you based on your labs.
Lee would advise that if anything, you took his advice with a grain of rice! Salt is a no no.
Although there are issues with Lee's approach, there are glaring issues with the approach you suggest.
1. The standard paradigm encountered by people at stage 3a is very often 'wait and see' or 'nothing to see' here. They arrive in here almost daily (as I did one day a few months back) with their 3a and 3b diagnoses and little else from their doctors.
2. Renal dieticians are as rare as hobby horse poo. They are tasked in the area of dialysis and transplant - for until 2020 that was the treatment paradigm- and there simply isn't enough of them to suddenly service a whole CKD population commencing stage 2 or 3a.
The 2020 KDOQI recognised implementation a significant barrier to the new guidelines on low and very low protein diets.
Not everyone can afford private renal dieticians, assuming even they can be found. Heck, many folk report not being even able to get a nephrologist until later stages! Neither a nephrologist nor a pcp is going to develop a kidney friendly diet for you. You are on your own in this.
Many renal dieticians won't be up to speed or familiar with.implementing a sVLPD (a 1A graded recommendation in the latest guidelines). Would it be advisable to put yourself in such a person's hands? Someone doing it old school? How do you know you are getting good/ latest / best treatment unless you yourself are up to speed. Trust a doc?
3. Lee, for all his flaws, was ahead of the NKF posse. Ahead. He covers a multitude of issues, not just very low protein diets. As a single source to bring a bewildered punter, whose just become aware they have life shortening illness, up to some kind of speed he has no peer. Unless you consider wading through the KDOQI a suitable entry point to the topic.
It's not perfect: Lee's book or approach. But most certainly, neithert are the alternative. With the former (not least because it attempts to educate you and train you in self advocacy) you at least have some chance of availing of the latest approaches.
Lee ought to be considered. Not as Scripture but as a very useful first source on which to build your Canon. That, I believe, is a fairer assessment.
Things Lee Hull's book seems to avoid discussing, even though they are major issues in those with kidney disease: * Water intake * Constipation * Alkalosis. He does not discuss the possibility that Albutrix and the vegan diet can create dangerous alkalosis in some patients. If you get lab tests only every 3 months, by then you could be in such a state of alkalosis you may not survive. Medium level alkalosis has a 46% mortality rate; severe alkalosis has an 80% mortality rate, and that is only if the patient is intubated, otherwise say bye-bye to this world for sure.
To be fair, not including every possible thing there is to say on a subject cannot be construed as avoidance. He doesn't cover water, nor gut, nor the various meds ins and outs, nor a whole host of other things.
If he does anything it's to stress that you need to be your own advocate. Which means self-advocating wrt to the advice he gives, naturally 
He also stresses throughout that you include your docs in this at every point. How can you succumb to alkadosis if you follow his advice?
You were on Albutrix. Did you read Stopping Kidney Disease as part of the process of heading in that direction?
I'm sorry if you have some kind of umbrage at what I have said about my experience with Albutrix. It happened. Let it go.
I was querying your choice of words regarding a book. You said the author "avoided" issues and using those words you place a kind of place the responsibility on him.
Whereas he puts the responsibility on you to include your doctors in what he suggests you do. He has no insight into every single persons conditions or complications - things that might add complication onto what for most people isn't a complicated thing: a vegan diet.
I suppose I read you as pointing the finger at others whereas you have a degree of responsibility for your choices (e.g. not seeking the guidance of your doctors in following the Albutrix route but instead opting, with multiple health conditions, to give it a go).
You also have to bear in mind that your multiple, complex conditions very possibly have the primary part to play in the reactions you had to Albutrix. As you yourself said: there are folk who are allergic to water. This is not so much waters fault as it is the condition in the person allergic to it. And so, more the onus on the person themselves to thread carefully.
First off, my issue was not over the vegan diet, but Albutrix.
As you know my nephrologist gives no input. You too have discussed how difficult it is to get a decent nephrologist, and you yourself went on Lee Hull's plan and Albutrix without a nephrologists backing, yet chastise me for doing so. Besides, I was referring to your last sentence in your previous comment to me. Your full line of commentary to me does seem like your are taking umbrage, is beyond 'educational', and getting personally confrontive.
Besides, going by Lee Hill's personal example, my choice to do this without my nephrologist involvement, would be encouraged (despite his words t o involve your care providers). After all, he actually 'had' to break the law to treat himself because he was declining under his doctors guidance, and there was no such product as Albutrix available in the U.S. So, when one cannot get decent medical care from their provider a person is forced to 'to outside the box' just as Lee H ull l did. The level of poor quality care from nephrologist that you and I have spoken about puts patients in a position of making these choices, just as you chose to do this when your GFR was dropping so much.
I would not be alive today if I had not gone 'outside the box' and self treated my heart failure with homeopathy after doctors sent me home to die in 1999.
And, doctors violate patients trust when they do harm to their patients. I would not have the medical conditions I am dying of it not for medical incompetence, or doctors disregard for patients health when they prescribe and deny there would be serious side effects.
Like water pills often cause diabetes and severe gout, yet doctors try to play them off as "So safe". Doctors don't tell you that ARB's, ACE's, statins, and even antibiotics, as well as other drug's, can tank your GFR. When I last seen my nephrologist she tried pushing the covid vaccination on me. When I explained that "I wasn't getting it because I always got so sick every time I got a flu shot." She replied, " Oh, but there is no risk from the covid vaccines. " How do you trust doctors who lie, and who prescribe with no interest to their patients safety? " And, give no health information on their diet when asked, as I have asked of my nephrologist. No. She has let me know by her words and her behavior that there are no efforts being made to save my life. So I did as I did in 1999, and 'went outside the box' to try to extend my life - just as Lee Hull did. Lee Hull is talking to people in his book who are often desperate and devoid of access to adequate nephrologist care. It is very easy for him to say, "Don't do as I did." It abdicates him from legal responsibility. But then, I was never trying to hold him legally responsible, but solely voicing my experience with Albutrix.
I couldn't agree more, though I don't think Lee Hull is claiming to have a cure. I reread the cover a few times to make sure what he was claiming. He only claims to stop or slow kidney disease which is far different than a cure. If he'd have said "cure" I wouldn't have bothered to buy the book. I just got it this week so I haven't read anything except the covers and the chapter information so I'm holding out my opinion on the contents : ) I do believe you can slow and possibly even stop progression depending on the stage and cause of your CKD. Cure or reverse damage, that can't happen in CKD.
I agree with WYOAnne. I am reading a book by an actual nephrologist, Dr. Rosansky (sp?) who disagrees with the low, very low protein diet with costly supplements and instead suggests no red meat for sure, and more of a plant based diet with appropriate protein like fish, chicken etc. like the Mediterranean Diet. I am cutting back on the amount of animal protein I eat, but not eliminating it totally. Diet is all so confusing to me and I am having the hardest time finding a renal dietician, either here in Arkansas or online. Any help with online folks would be appreciated. My Creatinine is 2.3 and GFR either 21 or 19 depending on lab doing the analysis. My nephrology NP did not seem too concerned, just said to lose weight and go on a renal diet. Very frustrated to say the least.
KidneyRD.com are online renal dieticians who have various approaches including sVLPD. I was considering them but got an RD in Ireland, because, I think, she was intrigued by the notion of someone doing a sVLPD.
TKidneyRD are U.S. based. They came across well for Yanks!
Dr. Rosansky differs with the National Kidney Foundation whose guidelines 2020 advocate low and very low + supplement plant based diets. The guidelines are the result of strenuous evaluation of the body of research into the subject.
The problem (well one problem) with meat is that its fairly packed with protein (as is the likes of soya). If you eat it you kind of blow you protein budget and can't eat much else that day. Meaning you can't eat much else and so can't get the nutrients and calories you need
What your urea (BUN) if you don't mind me asking. If that's out of spec, that tells you you're eating to much protein for your current kidney function. I'd have a hard time supposing your urea in range at your eGFR
Your experience with your nephrologist and inability to source a renal dietician underscores the points made to WYOAnne. We are, to a not insignificant degree, on our own in this. It's hard, it is confusing, it would make you want to head to McDonald's and pig out on a plate of Big Mac's at times.
But it is as it is.
HSV21 you are the head hog on hogville are you? Not trying to out you just wondering. He goes by HSV as well. I’m in Arkansas, Jonesboro. My creatinine is 2.4-3 and eGFR 14-24. Has been for almost 26 years. I can help if you want to answer here or message me. Up to you no pressure, just thought I’d offer. Go Hogs!? Unless you are an Indian…Er I mean…a Red Wolf Fan?? Lol!
Sorry, not hiding anything, I do not know who you are talking about. I am a transplanted Arkansan - Texas Aggie through and through! Those hogs are doing well though aren't they? Will also PM you.
Thanks to your post I bought the book last evening, Learn the Facts about Kidney Disease: A Self-Help Guide to Better Kidney Health with Proven Therapies
by Steven Rosansky", and I do think well of what I have read so far. It gives me hope again after all hope was dashed using Lee Hull's system.
I have read the Lee Hull book carefully, also a lot of VLPD (Very Low Protein Diet) research on PubMed. Lee Hull sums up 74-ish individual research studies in his book including a couple that are equivocal, just to be fair. So this is hard science supported by many studies in many countries, not just an opinion. (Most docs seem to hang on to tried and true approaches and try new things out carefully on a very few patients until a lot of other docs are doing the new thing- its a good practice, they have lives in their hands.) Anyway, people on VLPD plus supplements have much slower or no decline in kidney functions versus people on either VLPD and no supplements or people on LPD (Low Protein Diet) or people on LPD plus supplements. I was a science Geek back when I had more brain cells, which might help me approach scientific studies though the sections labelled "Results" in studies are usually plain. Here's the address of a search I just did on pub-med:(haven't figured out how to make a link) pubmed.ncbi.nlm.nih.gov/?te... A lot of studies use stage 3 or stage 4 patients. I'm still not sure if stage 3 people with no proteinuria (like me) are as harmed by protein as others, because Lee Hull writes of proteinuria as a marker of how well the kidneys are handling protein.
I have stage 4 CKD and no protein in urine. I think it is tied to the cause of the CKD. Mine is caused by 29 years of dehydration due to losing my colon and having a high output ileostomy. (I poop in a bag glued to my abdomen) The colon is where are water is absorbed and since I don't have one much of what I drink doesn't ever make it to my kidney. I see lots of details in the earlier replies. One general piece of guidance I've picked up from all my reading is that high protein foods - mainly meat - are harder for your kidneys to process. Making things easier for our kidneys helps to prolong their functioning. Sadly, there are few evidence based studies on CKD treatment effectiveness, including diet. The dialysis companies are too powerful and really dictate CKD treatment, focusing on their profits.
Whilst I'd agree the corporates have an interest in suppressing anything that might damage their profits, there is a decent amount of info on the efficacy of diets.
Plant based (no meat like you say) and low protein (like you say).
The NKF's 2020 guidelines recognise as much and now recommend low and very low plant based diets at early stages of the disease (typically 3a on)
You could say that the NKF have finally come into alignment with your views!
It still feels like a big maybe to me. We think plant based with extend your life. 6 months, 6 years, 16 years? who knows. NOTHING will cure CKD or reverse the damage. For as large as the CKD patient population is, there has been so little research on treatment. Nothing really new that saves or extends life. It is so frustrating to see my nephrologist every few months and pay him to shrug his shoulders. "I donno. I thought you'd be on dialysis by now." And I don't have a crap nephrologist. I've gotten 2nd and 3rd opinions that are all the same. I haven't gone plant based - I can't eat veggies due to my ileostomy and blockage issues. I have cut back on beef and avoid processed meats like pepperoni, bacon, ham, etc. But no one KNOWS if that really changes anything.
Good grief. Bad enough CKD without being so hamstrung as to diet.
No one is sticking timespans on things but it appears there is a significant enough delay or potential halting of CKD. Clearly, not everyone will benefit but I might or you might.
The indication appears to be cut out red meat ( and especially that den of toxicity, processed meat like salami and ham, etc). Then cut out meat (like Frankenchicken can't be good for you either).
What's the story with veg and blockages? Can it not be blended or something. I can't say blockage is the noticeable addition to my.movement since going veggie. The opposite is true and blockage is about the last thing I could envisage (if you catch.my drift)
I have a parastomal hernia next to my ileostomy. I get blockages from any high fiber. I could probably eat baby food, but am not willing to do that. Going plant based won't save me. What is eating baby food mush going to get me? Another 6 months?
Fair points, especially since there are anything but guarantees. The word in the literature is about slowing or halting the disease. Now halting is an objective answer to you 'how long'. It means something else will get you rather than kidneys. Slow .. Well what the hell does that mean.
My own take is that there are any number of disease and any number of co-diseases and any other number of factors contributing to things. And so prediction and generalisations are not possible. But I'll give it a crack. 3 months has seen urea and cholesterol drop dramatically. They are not the be all and end all.of it but it may work. Just may.
Beside, I'm 58. I wasn't planning to live forever so even slowing CKD would do me.
Wow folks the NKF KDOQI recommends low to very low protein. They do not have enough evidence to recommend plant protein over meat. However, protein in CKD patients destroys healthy kidney cells.
Link: ajkd.org/article/S0272-6386...
Guideline 3: Protein and Energy Intake
3.0 Statements on Protein Amount
Protein Restriction, CKD Patients Not on Dialysis and Without Diabetes
3.0.1
In adults with CKD 3-5 who are metabolically stable, we recommend, under close clinical supervision, protein restriction with or without keto acid analogs, to reduce risk for end-stage kidney disease (ESKD)/death (1A) and improve quality of life (QoL) (2C):
•
a low-protein diet providing 0.55–0.60 g dietary protein/kg body weight/day, or
•
a very low-protein diet providing 0.28–0.43 g dietary protein/kg body weight/day with additional keto acid/amino acid analogs to meet protein requirements (0.55–0.60 g /kg body weight/day)
Protein Restriction, CKD Patients Not on Dialysis and With Diabetes
3.0.2
In the adult with CKD 3-5 and who has diabetes, it is reasonable to prescribe, under close clinical supervision, a dietary protein intake of 0.6 - 0.8 g/kg body weight per day to maintain a stable nutritional status and optimize glycemic control (OPINION).
Dietary Protein Intake, MHD and PD Patients Without Diabetes
3.0.3
In adults with CKD 5D on MHD (1C) or PD (OPINION) who are metabolically stable, we recommend prescribing a dietary protein intake of 1.0-1.2 g/kg body weight per day to maintain a stable nutritional status.
Dietary Protein Intake, Maintenance Hemodialysis and Peritoneal Dialysis Patients With Diabetes
3.0.4
In adults with CKD 5D and who have diabetes, it is reasonable to prescribe a dietary protein intake of 1.0-1.2 g/kg body weight per day to maintain a stable nutritional status. For patients at risk of hyper- and/or hypoglycemia, higher levels of dietary protein intake may need to be considered to maintain glycemic control (OPINION).
3.1 Statement on Energy Intake
3.1.1
In adults with CKD 1-5D (1C) or posttransplantation (OPINION) who are metabolically stable, we recommend prescribing an energy intake of 25-35 kcal/kg body weight per day based on age, sex, level of physical activity, body composition, weight status goals, CKD stage, and concurrent illness or presence of inflammation to maintain normal nutritional status.
Rationale/Background
Protein metabolism in the body is responsible for adequate growth in children and maintenance of body protein mass such as muscle mass in adults. Every day, approximately 250 g of protein are catabolized, leading to protein catabolic products such as urea and many other known or unidentified compounds. Most of these degradation products are normally cleared by the kidneys and excreted in urine. When kidney function declines, there will be an accumulation of these by-products into the blood, which will progressively impair organ function.144 This has been clearly identified for compounds such as p-cresyl sulfate, indoxyl sulfate, trimethyl aminoxide, and fibroblast growth factor 23 (FGF-23), which are now considered as uremic toxins. Second, protein intake is responsible for a major fraction of kidney workload, and much experimental and clinical research has confirmed the renal effects of a protein load and a deleterious role of the renal hyperfiltration response associated with protein intake. Therefore, in a situation of nephron reduction such as CKD, reducing protein intake will reduce hyperfiltration, with an additive effect to those of angiotensin-reducing drugs.144 As a consequence of both actions, reducing uremia and uremic toxins on one hand and improving renal hemodynamics on the other hand, a reduction in protein intake may reduce clinical symptoms and postpone the need to start maintenance dialysis treatment.
In the context of these recommendations, “metabolically stable” indicates the absence of any active inflammatory or infectious diseases, no hospitalization within 2 weeks, absence of poorly controlled diabetes and consumptive diseases such as cancer, absence of antibiotic or immunosuppressive medications, and absence of significant short-term loss of body weight. Another consideration is determination of body weight for diet prescription. Because the body weight suggested (whether IBW, BMI, usual or current, or adjusted) depends on clinician judgment related to the patient's health goals (Guideline Statement 1.1.6), the specific weight formula used for prescription should be personalized to the patient.
Detailed Justification
Energy Intake
Energy metabolism may be impaired in patients with CKD. Hence, maintaining adequate energy intake is necessary to prevent PEW.
Evidence from 10 controlled trials in predialysis populations and from 3 studies in MHD patients indicates that energy intake ranging from 30 to 35 kcal/kg per day helps maintain neutral nitrogen balance and nutritional status.145, 146, 147, 148, 149, 150, 151, 152, 153, 154, 155, 156, 157 However, it is important to remember that many other factors may influence energy expenditure beyond traditional determinants such as age, sex, and FFM. Some of these factors include hyperparathyroidism, hyperglycemia, and chronic inflammation that should be considered into the overall energy prescription; health status (eg, acutely ill vs managed long term); overall health goals; and weight maintenance, repletion or loss.
There is still a paucity of controlled metabolic studies, as well as long-term well-designed outpatient clinical trials, studying energy intake in this population. Results from an old metabolic study examining energy requirements in MHD (sample size = 6) indicated that mean energy intake of 35 kcal/kg per day helped maintain neutral nitrogen balance and body composition.158 Another similar study in 6 individuals indicated that average intake of 38 kcal was desirable to maintain neutral nitrogen balance.159 Recent review articles not included in this evidence review also suggest that energy intake in the range of 30 to 35 kcal/kg per day is appropriate to maintain neutral nitrogen balance and nutritional status, although not based on additional research studies.144,160
Protein Intake
Reducing protein intake may impair nutritional status in individuals at risk for PEW. However, it is a well-known fact that adults in Western countries eat above their minimum daily requirement (1.35 g protein/kg per day) as compared with their optimal daily needs, estimated to be 0.8 g protein/kg per day. Further, metabolic balances in healthy adults and patients with CKD have confirmed that, provided there is sufficient energy intake (eg, >30 kcal/kg per day), the protein intake level can be safely decreased to 0.55 to 0.6 g protein/kg per day. A further reduction in protein intake to 0.3 to 0.4 g protein/kg per day can be achieved with the addition of pills of ketoacid analogues (KAs) to ensure a sufficient balance of the essential amino acids (EAAs) normally brought by animal proteins, which are basically absent in these low-protein vegan-like diets. Optimal metabolism of this lower range of protein intake requires adequate amount of caloric intake to promote protein sparing.
Protein restriction alone
In adults with CKD/kidney transplant, 13 RCTs reported the effect of protein restriction only (no supplementation) on outcomes of interest.149,151,156,157,161, 162, 163, 164, 165, 166, 167, 168, 169 The duration of follow-up in the included studies ranged from 3 to 48 months (Table S8b).
Survival/renal death
Research reports a beneficial effect of protein restriction (0.55-0.6 g/kg per day) on ESKD/death in adults with CKD. In adults with CKD, 5 RCTs reported findings on the effect of protein restriction on survival/deaths. Three studies clearly indicated a beneficial effect of moderate restriction in dietary protein on the development of ESKD/death.153,164,168 Rosman et al168 indicated that people consuming 0.6 g/kg per day of protein had better survival (55%) compared with patients consuming free protein intake (40%). Hansen et al164 indicated that death or ESKD was significantly lower in the low-protein-intake group (0.6 g/kg per day; 10%) compared with usual protein intake (27%). Locatelli et al153 also showed that an LPD (0.6 g/kg per day) had fewer events (27/192) compared with usual protein intake (1 g/kg per day; 42/188), borderline significant (P < 0.06), whereas Cianciaruso et al161 indicated that cumulative incidences of death and dialysis therapy start were unaffected by the diet regimen, and a low-protein-intake group (0.55 g/kg per day) does not seem to confer a survival advantage compared with a moderate-protein-intake group (0.80 g/kg per day) but may be explained by a relatively small sample size. Pooled together, results from the secondary analysis of the number of events of death/ESKD combined from the 3 studies indicated a beneficial effect of protein restriction on death/ESKD (OR, 0.621; 95% CI, 0.391-0.985).153,161,164
Quality of life
Research reports an improved quality of life (QoL) of a protein-restricted diet in one study. In adults with CKD, 1 RCT examined the effect of protein restriction on QoL.156 QoL scores at the end of the study indicated that the protein-restricted group had significantly higher scores for general health (mean difference, 4.0; 95% CI, 3.1-4.86) and physical status (mean difference, 10.0; 95% CI, 9.1-10.9) compared with the control group (0.6 g/kg per day vs 1.0 g/kg per day; P < 0.05).
Glomerular filtration rate
In adults with CKD, 5 RCTs reported on the effect of protein-restricted diet on glomerular filtration rate (GFR). Results from all the studies indicated that an LPD (0.55-0.6 g/kg body weight) had no significant effect on GFR compared with the control group (0.8 g/kg protein). Hansen et al164 indicated that at a 6-month follow-up time, there was a comparable and significant decline in GFRs in both groups. However, the difference between groups was not statistically significant (P = 0.87). Sanchez et al156 indicated that GFRs decreased by 17.2% in the control group compared to only 6.9% in the low-protein group (not significant [NS] between groups). Cianciaruso et al161 indicated that no effect of diet assignments was noted on estimated GFR (eGFR) and proteinuria (0.55 vs 0.80 g/kg per day). Jesudason et al165 reported that dietary treatment had no effect on changes in eGFR. Meloni et al170 (stage 3) also indicated no effect of protein restriction on eGFR decline (0.6 g/kg per day). Decline in GFR was reported by 3 studies, and a pooled analysis of these studies indicated no clear effect of protein restriction without supplementation on eGFR (SMD, −0.002; 95% CI, −0.192 to 0.188).
Phosphate levels
In adults with CKD, 2 RCTs reported mixed results regarding the effect of protein restriction on serum phosphate levels.162,167 Rosman et al167 indicated that patients in the protein-restriction group had significantly lower serum phosphate levels (used less phosphate binders; 0.4-0.6 vs 0.8 g; P < 0.05). By contrast Cianciaruso et al162 reported that phosphate levels were similar in the 2 groups throughout the entire period of follow-up (0.55 vs 0.8 g protein/kg per day).
Dietary intake
Seven randomized controlled studies149,156,157,163, 164, 165,170 and 1 nonrandomized controlled trial (NRCT)151 reported on dietary intake. Dietary intake was used as a measure of adherence in most of the studies. These studies indicated that protein intake was lower in groups assigned to an LPD (0.6 g/kg per day) compared with control or standard groups (0.8-1.3 g/kg per day). In 1 study, average protein intake during the entire duration of follow-up was higher than expected in both groups (control, 1.03 ± 0.18, and LPD, 0.78 ± 0.17 g protein/kg per day).163 Follow-up of at least 1.5 year indicated that adherence to diet did not change in time in either group. Hansen et al164 reported an estimated dietary protein intake at 4 years significantly lower in the LPD compared to the usual-protein-diet group (P = 0.005). Jesudason et al165 showed that the moderate protein intake group increased their protein intake (NS) and the standard protein group decreased their protein intake. In the study by Kloppenburg et al,149 protein intake during the high-protein diet was higher than during the regular-protein diet. Kuhlmann et al151 reported that protein intake was not significantly different among the groups. However, total energy intake significantly differed among each other. In the Meloni et al170 study, patients in the low-protein group were maintaining their intake at the 0.68–g protein/kg per day level, which was significantly lower than in the free-protein-diet group. Phosphate intake was also significantly lower in the LPD group. Sanchez et al156 showed that protein intake in the LPD group decreased significantly from baseline to the end of the study (P < 0.05). Energy intake tended to decrease during the study duration in both groups but it was nonsignificant. In the Williams et al157 study, compared with control, only the dietary protein and phosphate restriction group had a significantly lower protein intake level. Finally, Cianciaruso et al161 reported that the 2 groups (LPD vs moderate protein diet) maintained significantly different protein intakes (P < 0.05), with a difference between the 2 groups of 0.17 ± 0.05 g/d, which lasted from month 6 until the study end. Dietary intake can be used as an index of adherence to the diet.
Nutritional status
Research findings indicated that protein restriction did not affect serum albumin levels or anthropometrics in adult patients with CKD. In adults with CKD, 2 RCTs reported no effect of protein restriction (0.55-0.9 g protein/kg per day) on serum albumin levels compared with the control group (0.8-1.3 g protein/kg per day).149,161 In adults with CKD, 1 RCT reported no effect of protein restriction (55-70 g/d) on anthropometrics compared with the control group (90-120 g/d).165
Blood pressure
Two RCTs reported no effect of protein restriction (0.6 g/kg body weight vs usual) on BPs.164,165 Hansen et al164 reported that BP changes were comparable in the 2 groups during the follow-up period. BP was equally and significantly reduced during the study compared with baseline in both groups. Jesudason et al165 reported no overall changes in BP for both groups. However, there was a time-by-treatment interaction (P < 0.05) for diastolic BP (DBP). DBP was lower throughout the follow-up period in the moderate-protein-intake group.
Lipid profile
Research reported an improvement in serum lipid profile during an LPD. Coggins et al171 determined that an intervention diet providing 0.28 kg/kg per day showed significant decreases in TC, HDL-C, and LDL-C levels between baseline and the 6-month follow-up (P < 0.05). The diet providing 0.575 g/kg per day reported trends for decreases in TC and LDL-C levels between baseline and the 6-month follow-up (P < 0.10). Cianciaruso et al162 showed a significant decrease in LDL-C values in the LPD group, but not in the moderate-protein-intake group.
Thanks for posting this. I have read it previously, but found it odd that no mention was made about daily water intake. Isn’t that an important factor in managing CKD?
Hi Whats, My BUN is 21 which is in the normal range. I'm Stage 4, my BUN has always been normal in all Stages and my entire life.
That being said, I became a vegetarian at age 10 and also spent many years switching back and forth between vegetarianism and veganism. It's been 50+ years since I've had meat.
Good luck, I hope your plant based diet continues to help. The less strain on the kidneys the better. I'm all for plant diets, it's great for cholesterol, diabetes and many other health problems. It's too bad more people don't try it before they develop health problems.
🐇
Thanks, Sophiebun11. I'm newly sold on the plant-based diet, I tried to eat a little salmon-yuck. I kept imagining a lively wild fish, though I'm sure it was factory farmed and never leapt glistening from a wave. I have no sympathy for egg whites though, They're good in a waffle, but are waffles good for me? Great that you haven't eaten meat for so long.
Just went down to stage 4 [gfr23] from 29 and recently 30 but still no protein in urine. Bun is now 37 [7-25]; creatinine is now 1.92 [0.60-0.88] bun/creatinine ratio is 19 [6-22] total protein is 6.8 [6.1-8.1] albumin is 4.0 [3.6-5.1]. CKD hypothesizes to be a result of BP which is now stabilized at 120/70. No other major medical problems. What transpired between labs was that I ate more protein than usual [but not much more] as I was on vacation with family and had a difficult time selecting only plant based. Basically, I'm was on a diet with stresses veggies and includes only chicken and fish occasionally. Last visit with nephrologist [3 weeks ago], he believes that I may have been eating more protein than usual and asked if i could only use animal protein twice a week. This is odd because his instructions puts me using more animal protein than I usually do. Right now, I'm trying to restrict it to once a week. Incidentally, he is super-involved and has been a champion in getting a lot of my numbers within range. I see him every four weeks now instead of six and get labs each time.
Anyone care to analyze these numbers for me. I'm hoping that my vacation meals which did include more animal protein has caused the numbers to change in the wrong directions. Hopefully, when I more plant based now, they'll go back to grf3b.
I have a question. Are plant proteins also problematic or do they do well in keeping us from become anemic?
I need to go bac k to school to get a chemistry/nutrition degree. Its so complicated and kind of scary to think that a little more animal meat can cause such a decline in CKD functioning. I feel as if whatever anyone says about protein in and protein out, DIET RULES.
Best, Stasie Wells
You are so lucky to have a nephrologist who sees you that often and is that involved. I seen mine about a week ago, and even though I am back in serious crisis of alkalosis... first she lied to me about my test results (she only gives me my lab results begrudgingly at the end of the appointment via her nurse, and when she is long gone from being asked anything about the labs)... but she set my next appointment for a year out. I know danged well after seeing my labs that she does not expect to see me alive in a year, and going by the labs probably doesn't expect me to live long at all. But, I sink my head into the computer and do a ton of research, and if I can I do plan on being here for more than just a few months, though I doubt I will be here longer than maybe spring... I have never had a nephrologist that gives a rats. All they do is collect their money for the office visit, gives NO advice or guidance (even when asked), and don't care if you live or die. But then, I am on Medicaid, so they really do NOT care if you live, after all, as they say, "You are costing the system a lot of money." My life is solely in my hands as to how much, if any, I can extend my life via educating myself on what to do for myself.
Hi drmind,I see that you've asked for people to "analyze these numbers" but please note that this forum is not to diagnose or assess your laboratory values. That is for your healthcare provider to do. Please be sure to direct questions regarding your labs to your physician.
Of course, I know not to expect people on the forum to diagnose my labs. But, at the time that I listed mine, several individuals were going over various items and patterns noted on their labs and I offered mine. I have a close relationship with my kidney doctor and always go over results with him. However, thanks for the warning. Best to you
Wonderful. I'm glad to hear that you have a good relationship with your doctor. Just wanted a friendly reminder.
I get all my labs at Quest Diagnosistics. They email me the results in 2 days after they email my doctor. And included in the results is the ability to see the results for each item "over time." I can see the results back to 2010 since I started with them.
With alkadosis, you may want to ER for treatment ASAP as well as to ask them to refer you to another nephrologist. Even though you are on Medicaid, you must not view yourself as unworthy of obtaining adequate health care. Call some government agency to get the help you need. I know a lot of doctors do not take Medicaid as payment, but do try to find an internist that will. Would contacting local social services help? Please keep us posted.
Bless you and good luck.
I don't view myself as unworthy of proper medical care. Doctors do.
Good for you.
I totally agree. Everyone is worthy of adequate healthcare. Sounds like you need to doctor-shop for a better nephrologist and PCP. Good suggestion to contact local social services. Also, check into the possibility of finding another insurance plan to replace/supplement Medicaid. If you're on disability due to your CKD issues, you should be able to find a Medicare supplement plan. Or even Medicare itself would open up additional options for physicians. Of course if you're Medicare-eligible, that opens up a whole range of plans. Since you "sink your head into the computer", your health insurance coverage and providers should be top of your list of "things to do" to ensure you're seeing the best possible providers. I'm sorry that things have gotten you into such a negative space...it's safe to "talk" here, but perhaps talking to someone that might help you like clergy, a good friend, social worker, etc. might help you deal with your declining health. Please don't dig yourself into the grave by setting a timeframe of "Spring"...keep fighting and pushing to find what works best for you, and fight to get medical care that works better for you. Good luck.
I have Medica, Medicare, and Medicaid. Medicaid because I am dirt poor and cannot afford to pay the deductibles or what is left unpaid from Medica & Medicare. But, all the doctors see is that you have Medicare, and OMG no, Medicaid, and they choose not to even take you as a patient. But, you are right. I need to see about checking into another hospital group in our area, and see if I can get a decent nephrologist over at that other place. Thanks for the boost.
Its not fair that you have to fight for medical care. I'm rooting for you too.
Check into Aetna Medicare Prime HMO Plan. I'm on Medicare and changed to it in 2020. It's the best and most affordable plan I've ever had. I had over $75K in expenses last year, and the only out-of-pocket I paid was $100 deductible for an MRI. I went to a reliable Medicare ins. co. that our church had come in to speak to us at this time of year several years ago to tell us seniors what they do. They don't charge a fee, and have no vested interest in what plan, if any, you select. Anyway, we discussed my financial situation (similar to yours...SS only income, no savings, etc.) and they matched a plan to fit my needs. I've met with them every year for 4 years now. They found a better plan for me beginning in 2020 so I switched, and boy am I glad I did. I had a decent plan before, but was unable to afford specialist visit co-pays ($35ea), tests, p/t, etc. Changing to this plan changed my life, literally. I couldn't afford even one p/t visit before, and since March 2020 I've been going 3x/wk and have had zero out-of-pocket. Many specialized tests over the past nearly 2 years and zero co-pay except for the MRIs. I checked and they have offices all over the country (which I didn't know until looking it up for you today!). I hope they have one near you...it's worth a call and/or a drive. They are called The Medicare Store. I hope you find one in your area, or a similar one. I'm positive they can find a plan that will help you receive the affordable and complex care you need. We all know that we're bombarded by tv ads & calls about Medicare offers/plans. Be careful and check out who you speak to. I was lucky to find a company that I trust. One previous year they checked everything out and said I had the best available plan for my circumstances. The next year they found this new plan would be better for me and provide more coverage. The only down-side was that I had to change PCPs, which I cried over when signing the paperwork! I'd had mine for 14 yrs. But, I found one just as good, and also great doctors for all of my other health issues that I never could afford to get treated before...major skeletal orthopedic issues, gastrointestinal & swallowing, CKD, etc. Please take the time to research what may be available in your area. I will pray that you find a better plan that you will be able to afford and that will provide you with the care you need. Take care.
How much do you pay for your plan?
MarissaA_NKFPartner
Hello all,I've read some responses regarding dietary supplements and would like to remind everyone that before taking anything to be sure to consult with your doctor to make sure it is safe for you. Even over the counter supplements, vitamins and dietary changes should be cleared through your healthcare provider.
Hi new on this..I have stage 3a kidney disease but with no treatment im.wondering why such long post about stage doesn't the older polutaltin walk around neve knowing about kidney disese .. I'm not under the hospital and no treatment plan from my gp? I'm it been rude against anyone but wondering why such long post about it..and it as got me thinking?
Hi-I think people on this site are trying to delay kidney damage, and looking for support and tips from other people. If your GP didn't refer you to a kidney specialist, you should phone his office and ask for one, especially if you don't know why your kidneys aren't doing so well. The thing is, when you lose kidney function, you don't get it back and it just gets worse and you move to a worse stage (up to 5) until transplant or dialysis and death. I'm stage 3A and really want to take care of my kidneys. A person doesn't usually have many symptoms at the earlier stages except maybe you're a little tired and have to get up at night to pee more, but that's how kidney disease is. Slow, usually. Then if its faster than you expect, you may write a long post wondering why. You can definitely slow it down with a good diet, but for some reason, most kidney specialists don't talk enough about diet. Good Luck.
Oh.. I thought my doctor/GP would automatically refer me if it was bad I often get my bloods done due to biological drugs I’m on for RD and under the rheumatoid specialist Doctor And I’ve seen plenty of specialist nurses over the five years and no one seem over concerned about my kidney function. Or my gp.. I accidentally came across this post. Don’t eat red meat anyway what else should I leave out my diet .?
There isn't that much doctors can do in early stages until dialysis or kidney transplant. Control diabetes and high blood pressure if those are problems. My kidney doctor changed my medicines, which helped a lot, so if you take a lot of medicines, that's one reason to see a specialist. Animal protein in general seems to be a bit harder on the kidneys, and several people on this site post that they've done well on plant-based diets, but that's the limits of my knowledge, my own experience and some posts, also a book by Lee Hull. Milk and cheese and salt aren't good, but if you go vegetarian, be sure to get plenty of protein usually from beans or tofu or one of those vegetarian protein products. Sugar and fat don't affect the kidneys directly, but they can mess with your health. There's also a kidney friendly protein supplement, Albutrix, that seems to have good results along with a specific diet, but its expensive. Some people with CKD, but not all, have to restrict potassium, but your GP would surely have told you about that. My kidney doctor told me to follow the Mediterranean diet and not worry about other restrictions, but I just wanted to be as careful as I could with diet, since its the main thing I can control, that and plenty of exercise. If you're overweight, try to lose it, but slowly. Be sure your doctor knows about supplements because some can be harmful. Advil and Tylenol and maybe even Aspirin are bad for kidneys, so check with your doctor about the best pain relievers. Okay, those are my suggestions, but I've only known I had CKD for a few months, so I hope you can ask more experienced people too, like a kidney specialist.
I accidentally found out about my ckd .. I needed a form for work from. My gp about my health issues and about early retirement this was about two years ago, my gp says stick to a med diet and that was it basically no referral And watch and see. Exercising is difficult my joints not allow it.
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itchy skin with red bumps and hives all over the body with proteinuria 
Stage 3 chronic kidney 
aches and pains ?? --- with CKD stage 4 
Feeling different with CKD Stage 3
Losartan Side Effects
