Our newest venture – the Kidney Stone Prevention Course.
It arose from this idea: Kidney stone prevention depends a lot on proper diet and fluids, which patients control. This site tells people what that diet and what those fluids should be, but not how to eat that diet or drink those fluids in real life.
They have to learn how.
So we built the kidney stone prevention course to help them learn.
Just as Raphael imagined generations of brilliant minds come alive together in The School of Athens (Raphael, 1509 -1511; Apostolic Palace in the Vatican.), we – on a vastly lower plane of existence – imagined and have, in the kidney stone prevention course actuated the knowledge on this site into real life.
The Missing Link
Physicians know this. You can’t learn to practice from a book – or a website. You learn from other doctors and then perfect yourself in practice.
In the same way, patients cannot learn how to implement a prevention plan just by reading. They need a teacher. Then they can perfect themselves over time.
Now you know my assumption, my working hypothesis if you want to be fancy.
Who Shall Teach Kidney Stone Prevention?
Certainly. But how much, how long, in what detail?
Do I have an hour for this? For each patient? Food is a big topic, almost infinitely detailed. Thousands of choices in each food category. I say, we need 65 mEq/d of diet sodium. I point out food labels. Portion sizes. Problems of eating out, take in. My hour passes as a cloud in summer, here and gone again. My patient leaves and is not educated enough to practice wisely. Too little, too short a time.
In fact, stone experts at one outstanding kidney stone prevention center now offer courses to scale education. Perhaps this will become more common with time. Perhaps physicians cannot allocate time to courses within the stringencies of modern practice
Certainly, but nurses encounter the same problems as physicians. Who pays? Where does the time come from?
Certainly, and as a prime part of their professional education and training. But most – perhaps almost all – focus on large scale issues like diabetes, hypertension, CKD, and obesity. Kidney stones occupy a niche. Even running courses, the few in that niche suffice for too few patients; the US contains millions of stone formers. To serve them in traditional nutrition counseling demands a great expansion of skills within the profession.
A Kidney Stone Prevention Course
Between the organized and precious skills of professionals and the clutter and sheer chaos of everyday life, let’s interpose public education aimed squarely at diet and fluids for kidney stone prevention – try this and see what happens. Moreover, let us use modern technology to lower cost and save time.
A course permits one person to educate many people. Social media and web tools scale a course: people need not convene physically.
Physicians, nurses, nutritionists sell their time. People in a course split the cost amongst them. This makes education more affordable.
An hour of education might require another hour to travel there, park, unpark and go back home or to work. That takes time from work, or children, or other matters. A course transmitted using modern media makes travel to some one place unnecessary.
Any course arises from some compendium of reliable knowledge. Physicians and nurses and dieticians possess such knowledge in their minds but students in a course have no access to it apart from the hours of teaching. Just as patients cannot learn to manage diet and fluids by reading they cannot learn just by listening; they and their teachers need to share a common base of knowledge – like the textbook for any conventional course in a school or on the web.
We Have Produced a Kidney Stone Prevention Course
We have done it. I and my writing colleague Jill Harris.
It Depends on this Site as its Knowledge Base
Jill wrote many of the most popular articles on the site about diet and fluids, and set out to find a way to use her materials as a course for patients. She and they can use other articles as well as source material. The site itself rests on a foundation of peer reviewed articles from PubMed to which its main articles link.
She Does One on One Patient Education and Finds it Limiting
For a long time, Jill has worked one on one with stone patients and encountered the problems of scale and cost. She long ago gave up on a fixed office format and coaches by phone or web media. But even so, scale and cost limit her reach. For 12 years she did brief education calls for thousands of patients nationally who used Litholink as their testing service. From her practice and her past Jill came to understand that scale and media and cost create many kinds of compromises in what patients can get.
She Uses Social Media to Form Active Support Groups
The web abounds in spontaneous social media groups of kidney stone patients. Patients value them and use them. Jill formed one for those interested in the course and curates it personally.
She Has Tried Her New Course Format Five Times Thus Far
Out of it all she chose her present format and has used it in five courses so far.
Her courses make room for up to 12 people. This size optimizes cost per patient, efficient use of one teacher, and opportunity for each patient to interact and ask questions. It may change with experience.
The main topics follow the medical logic of the site: fluids, sodium, calcium, oxalate, how to read lab reports, and questions and answers. It runs in six one hour sessions. I have personally participated thus far in two question and answer sessions – at the ends of the first two courses.
Where Does the Kidney Stone Prevention Course Fit In?
It fits within this figure that depicts my view of how testing and treatment work for stone prevention.
Things begin when physicians order initial tests (see ‘begin’ on figure) to identify the main abnormalities and make a treatment plan that includes diet and fluids.
Because the kidney stone prevention course aims at enabling the fluid and diet goals, it stands between when physicians identify those urine abnormalities and when patients adjust their fluid intake and diet within their lives so as to correct the abnormalities found.
It could also stand between any subsequent urine abnormalities due to unfavorable fluid or diet use and the retest to determine if the new treatment has the desired effects.
It acts much like Jill’s private coaching but with a group format that conveys greater scale, and lower cost per patient. Group interaction is a side benefit above private coaching. People get the audio file of every session.
They also get email support during the course. How much this adds and whether this can be maintained under increasing scale of courses remains uncertain.
What Has Happened So Far?
To date 57 people have enrolled in 5 courses of which 2 have completed. We have 22 email comments pending return of formal survey questions. Their uniformly positive tone encourages us that the courses are meeting real demands from patients.
Responses to Poor Retest Outcomes
What happens when the 3 month retest results are poor for patient graduates of the course? Or 6 month, or one year retests?
But in the future we will need another unit, probably individual free standing question and answer sessions for graduates who encounter less than ideal outcomes and need special issues resolved. They cannot redo the whole kidney stone prevention course but need the scale and cost benefits of group education.
Call this offering phase two. It serves not only problems from the 3 month retest but all subsequent problems graduates encounter within the purview of fluid and diet management.
Timely Review for Successful Graduates
Those of us with a long experience know that success breeds failure, that years stone free create a sense that all is well. But it may not be well and stones recur. Presently we consider some kind of one hour, perhaps yearly review for those doing well. Call it phase three.
Maintenance in Treatment
Ultimately physicians drive and maintain treatment. A course structure, a website – these are ancillary. But the outcomes of the courses concern us: Do people stay in their diet plans, their fluid plans; do their tests get done; are they good? We do not have a real plan right now. But need one soon.
Integration of the Kidney Stone Prevention Course and This Site
As a writer of her own articles Jill teaches from what she put up on this site. She also uses whatever I or others have written that concerns fluids and diet. Because the site rests upon the peer reviewed literature so does the course material and what patients learn.
One might think people would want to read an article, on sodium for example, before that part of the course. But no; they usually prefer to hear the discussion and then read, if at all. We have not collected formal data on this point but it suggests something about use of a knowledge source vs. direct education by a teacher.
Why Do I Say ‘We’ When Jill Does All the Work?
Because the site and the kidney stone prevention course work together.
I propose this specific combination of a web based course and knowledge base might constitute a new paradigm fostering large scale stone prevention. Modern media, web based, support public, affordable, scalable education about that part of patient care that patients must themselves accomplish. In stone disease and maybe beyond we desire to innovate and get better care for patients. Doing it, and ultimately presenting the results – this is coarse grained, public, clinical experiment. Not perhaps real research. We have no control groups, and aim only at the good of patients. But we will observe and see how well the graduates do.
73 Responses to “KIDNEY STONE PREVENTION COURSE”
Hello, what a wonderful website! My question concerns a stone analysis with 10% Ca Oxalate Monohydratre and 20% Ca Oxalate Dihydrate. Brushite Crystal is 70%. It would seem that there is a small amt of Oxalate compared to Brushite. ls a diet low in Oxalate not needed here, but one low in brushite??? As always, fluids taken seem to be a priority in most literature. Thank you.
Fredric Coe, MD
Hi Deborah, brushite stones are a special case and require special handling. They are a version of calcium phosphate stones. You need to start with a comprehensive evaluation, and will no doubt find high urine calcium and pH as main causes. Brushite is central in calcium stone production, and brushite stones can grow rapidly. Of importance treatment needs to be sufficient to lower urine brushite (calcium phosphate) supersaturation below 1, something your physicians certainly accomplish if they agree with what I have written. Regards, Fred Coe
I understand that eating dietary calcium with oxalates can bind the oxalates in the stomach and intestines, so that it can not combine in the kidneys and possibly form crystals. How many grams of dietary calcium from dairy sources should I eat to bind a gram of dietary oxalate? I’m thinking chocolate milk, putting cheese on my brussel sprouts (super good, btw :-), and such as that.
Second, I am reading conflicting studies about lemon juice vs orange juice consumption and effect on urine pH and forming oxalate stones. Which do you prefer?
Last, in all of the estimate tables that I have found, 8oz of “orange juice” is shown as about 1/10 the oxalates of an orange. The only thing I can conclude is that the oxalates are in the pulp of the orange, which is pargely eliminated in “no pulp” style OJ. Does that seem sound to yall?
Thank you very much!!!!!
Fredric L Coe, MD
Hi Dale, The equivalents for diet calcium vs oxalate are not known at the level you want. Therefore the best idea is to eat some high calcium foods – almost always dairy – with meals that have significant amounts of oxalate. As for the fruits, they often contain citrate as citric acid when tart (low pH) and citric acid does not produce alkali when metabolized and therefore cannot raise urine citrate. As for oranges, the rind is most likely to concentrate oxalate. Regards, Fred Coe
Good evening Dr. Coe. I am 40 years old and was diagnosed at 18 months old with primary hyperoxaluria. I understand that following the Kidney Stone Diet will not completely keep me stone free, but in your opinion will it help curtail the frequency of new stones? I take potassium citrate, but no other medicines or vitamins.
Fredric L Coe, MD
Hi Matthew, That is a very complex and potentially dangerous disease, and I hope you are receiving care via a major center with skills in its management. Diet is of marginal help except that high sodium intake and avoidance of diuretics are important to reduce risk of kidney damage.The linked case is hyperoxaluria from intestinal bypass, but oxalate is oxalate, and the physiology applies broadly. The low sodium aspects of the kidney stone diet are not correct for you, nor is the high diet calcium unless carefully monitored. I am sure you know that Mayo Clinic has a special program for PH1. Regards, Fred Coe
I am 63 and stand 75 inches and weigh about 190 lbs. I follow Jill’s course and my numbers are all good according to Jill. I had a total right nephrectomy in 2016 when I had my first and only stone and thyroidectomy in 2018. Both due to cancer. My eGFR is 54 and my creatinine is at 1.4. My nephrologist has limited my protein intake at the same levels as Jill and you recommend but I am noticeably losing muscle mass. I try to eat about 2500 calories per day. Any thoughts or advice?
Fredric Coe, MD
Hi Kevin, Losing muscle mass is a medical problem, and a bit beyond the range of this site. Given the thyroid disease, perhaps your replacement dose of thyroid hormone is too high. Eating 0.8-1 gm/d of protein – the right range – should not cause muscle loss. Be sure you are not too low in protein – 24 hour urine PCR will show you that. Otherwise, if none of this works, your physicians will have to figure it out. Regards, Fred Coe
Any information regarding nutritional drinks for cancer patients?
My mother underwent treatment and diet is almost exclusively Boost Very High Calorie (problems with swallowing and dry mouth).
She developed calcium oxalate kidney stones this year.
Fredric Coe, MD
Hi Laura, If she is getting very high protein intake that could raise urine calcium and cause stones. It has soy protein and could be high in oxalate. The best approach is to do a 24 hour urine and see what is causing the stones. Regards, Fred Coe
What is the recommended protein intake for a 77 year old? Her current intake (from Boost VHC) is 66 Grams/day.
Fredric Coe, MD
Hi Laura, I do not know her weight but 1 gm/kg of body weight is ideal usually. For special supplementation after illness one might want more for some limited time. Regards, fred Coe
Any data on oxalate content and coconut milk
Hi M Butensky,
We have no hard data, but I do have my patients eat and drink coconut products and their urinary oxalate remains lower than before they started the diet (and adding coconut products).
Hello Dr. Coe,
I recently passed my 2nd stone, (“several” 1-2 mm left in right kidney), composition:
6MM, 98% Calcium Oxalate Monohydrate, 2% Protein
My first was,
4MM, 96% Calcium Ox, 2% Protein, 1% ea Calcium Phospate Carbonate/Hydroxyl
My 24 hr urine comparison revealed,
Urine volume up from 1.71 to 2.54
CaOx down from 7.42 to 4.99
Urine Sodium down 171 to 105
Calcium/Creatine 211 to 207
PH up from 6.0 to 6.1
Urine Calcium up 244 to 284
Protein .9 to 1.4
Phosphorus .826 to 1.085
Sulfate 30 to 55
Nitrogen 7.32 to 12.69
Calcium/kg 3.7 to 4.3
During this 24 hr analysis, I tried to keep it somewhat real and did not realize the sodium in “reduced sodium” soy sauce (2400 per 1/4 c.) so that was out of ordinary, will not use again!
I didn’t record foods in 1st 24 hr to compare.
Sodium 3,000 overall – holy cow if I ingested 1/4 c. so may be overstating
Protein about 69 (high also)
Calcium only 69% of 1200 goal
Thiazide recommended but doing another analysis in 3 months first. I really don’t want to take medication. Could this be off due to my diet sodium, protein, calcium above? Surprisingly my sodium was within range(?)
Suggestions? Thank you so much in advance!
Fredric Coe, MD
Hi Lisa, One more! This one adds that you know your sodium was too high and calcium low, protein high. So, fix this and retest. Regards, Fred Coe
Hi, I’m in New York.
My husband has kidney stones almost every year for about 30years.
Last May 17,2018 he has left plank pain that relieves by Naproxen but the following day,he has a bloody urine, nausea and vomiting. So I brought him to Emergency of Mount Sinai Hospital about 6pm because of pain,bloody urine and vomiting. CT Scan done. found out a 4mm kidney stone.By 10:30pm he was discharged bec.he was relieve with pain medication. Sunday night May 20,2018 he felt really bad pain which I took him back to the Emergency.And his primary doctor told my husband stay in the hospital until the kidney stone pass out.
So my husband stayed in the hospital until his urologist scheduled a Cystoscopy for both Urethral Stent insertion May 25,2018 @9:00am. The surgery takes about an hour and after the surgery he pass out about 6pcs of stones.I saw it bec.I stayed with him in the recovery room until they transport him to his room about 12:30pm.
At 6:30pm of the same day he was discharge with a urethral stents.
At home he was complaining burning sensation upon urination and bloody urine which is normal after surgery.May 27-29 he feels great!No pain,no bloody urine. So we went to his urologist appointment 2pm of May29,2018. The urologist remove the Stent on his office.We went to the restaurant for dinner and he pass out 1 stone.When we got home he has pain, bloody urine and pass out another 4 stones.Only a prescription pain medication relieve that pain.Until now he feels the same and I’m worried for taking this pain medication because he is Hypertensive and Type 2 Diabetes Mellitus.
What should we do Dr.Coe.I need your help.
Fredric Coe, MD
Hi Junifer, judging from the story he has many retained stones or stone fragments. His urologist can attend to them if needed, or they can pass. Being diabetic it is important to avoid obstruction as his physician knows. So, the immediate episode is workable and will resolve. Of greater importance, what are his stones made of? In diabetics uric acid is common and prevention is nearly perfect. If another kind of stone, prevention will still be effective. So when this is over he needs a proper program to prevent more. Here is a good place to start reading about what to do. Regards, Fred Coe
I’m in Australia.
I’ve suffered extreme pain left side, left flank for 10 years.
I had a specialist do work on my vagina though I had two easy births and felt I’d never experienced a prolapse.
Another specialist booked me in to remove 1ft of my colon. I was sceptical. I lived with the pain for years until February 2018 when I ended up again in the Goulburn Base Hospital, Goulburn and saw a gastroenterologist who put me on a drip and ordered a CT scan. He discharged me the next morning in the same pain.
The CT scan again (I had many) showed a 2 cm stone in my left kidney. This was ignored.
I then sought further opinions from St Vincent’s Clinic, Sydney. I saw a gastroenterologist, Dr Alan Meagher, who said my symptoms did not match diverticulitis. I then saw Dr Kooner, Urologist.
I have been in treatment every 2 weeks since early March. Ureter stents, lasering, lithotripsy. It was no easy process. I’m now stone free. Go back to Dr Kooner in 8 weeks for another CT scan and seeing, Dr Mark Penny, Nephrologist, about proteinuria.
Dr Kooner saved my kidney which was being compromised by the large stone.
I’m drinking lemon juice water each day. My huge stone was calcium oxylate.
I’m wondering if this diet will suit me?
To stick on a program I need a weekly menu system. Does this diet contain a menu system?
Fredric Coe, MD
Hi Rosemary, Prevention of more stones is a process, and the course is really only about diet counseling in the event that is all you need. Right now you need a full evaluation to find out why you formed stones in the first place. That begins with analysis of the stone and blood and 24 hour urine testing. Your physicians are in charge of all that. Here is my favorite overall article as a starting place. Regards, Fred Coe