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?
Physicians
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
Nurses
Certainly, but nurses encounter the same problems as physicians. Who pays? Where does the time come from?
Dietitians
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.
Scale
A course permits one person to educate many people. Social media and web tools scale a course: people need not convene physically.
Cost
Physicians, nurses, nutritionists sell their time. People in a course split the cost amongst them. This makes education more affordable.
Patient Time
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.
Curriculum
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.
Missing Parts
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?
Presently, nothing.
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”
Sharon
Hello,
I develop calcium oxalate stones on a regular basis. When I finally saw a doctor(when medicare kicked in so I could afford one)he and my urologist convinced me to have my thyroid removed and they both agreed I would not have another stone. I believed them and within 3 months of having it removed, I had my second stone surgery. Both doctors(term used loosely here) were red faced at my next appointment and the urologist suggested I see a kidney doctor who is having some success with prescribing a certain blood pressure medicine that has been known to interrupt the calcium stones from forming. I asked what were the worst side affects and death came up as one and I would have to be monitored each week(a real money maker). I declined as my blood pressure is usually 106/71. I find it hard to believe there isn’t a remedy for kidney stones as they go back thousands of years…perhaps not enough money to make off a cure? I now take an herbal remedy called Chanca Piedra, taken in capsule form each day. When I forget and notice that tell-tale dull, low back pain kicking in, I take 2 caps 3X a day for a couple of days and within a few hours the pain is gone and my urine stream is heavy and complete. I have not had an attack for 4 years now and I was having them every few months with incredible pain and lots of blood in the toilet. The herb is an old remedy from the Rainforest that has been used for hundreds of years. I also developed type 2 diabetes and the diabetes diet cancelled out the stone diet which was very defeating and with doctors who not only don’t have a clue, but lack even a caring attitude and this is their specialty! What this has done for me, however, is sharpened my own awareness of having to research each and everything I am told and not to take anyone’s opinion of how to treat you as gospel. It is exhausting to always second guess what is being told to you, but read, read and then, read again everything you can on the subject. You need to be your own advocate.
Fredric Coe, MD
Hi Sharon, I know about the herb and have meant to write about it but have not had time. It has little evidence to support its use but it seems to have been a benefit for you and that is wonderful. The thiazide your physician recommended almost never has caused death and is in fact the main drug for high blood pressure – you do not have that! – and in that use has saved lives. The kidney stone diet is actually ideal for diabetics, being identical to the diet recommended to all Americans; take a look. One of the main reasons it is recommended in the US is against diabetes. What I do not much like about your prevention is that without that kind of diet you have no protection against bone disease – take a look. Regards, Fred Coe
Shirley Clarkson
Hello, i would be interested in this Course, i Live in The UK, I have had Oxolate Kidney stones on and off foe 29 years, i have had several operations and am awaiting a 4th Ureteroscopy now, i have had 10 operations since 1988.
I am am my whits end with the Urologists, i am waking up early hours in the morning in agony, i am prone to Pyelonephritis (Infections) and hydronephronsis. i am due to see my Surgeon tomorrow for a Consultation, and don’t want to be fobbed off, i need answers! I have changed my diet, so i understand what i cannot and can eat, i would appreciate some feedback on what to say to him regarding all this, after 29 years, i still have no answers from them.
Many thanks
Miss Shirley Clarkson.
Fredric Coe, MD
Hi Shirley, the course is about diet and may benefit prevention. But the whole of prevention is more than diet. Here is a reasonable review. I gather you have stones sans systemic disease; this is my best review of treatment for the common ‘idiopathic’ calcium stone formers. This article may help – it presumes interested physicians, however. Likewise this one about how to pull things together. With all the stones, I imagine you need both diet/fluids and medication. Regards, Fred Coe
JOYCE LEININGER
Dr Coe, just thankfully found your site. Not tech-savvy, didn’t know how to submit comment without hitting “reply” to another’s, please overlook “intrusion!” Hoping you can advise! I am 68, retired RN, in Chicago burbs, had one oxalate stone removed in Oct 2015. Was given almost nothing in the way of stone prevention info, no initial baseline 24 hr urine had been advised or done right after stone removal. Was overweight/obese, poor lifestyle, basically made no changes. First 24 hr urine was Mar 2016, results of course were not good Was then prescribed K citrate 15mEq/day, and had my HCTZ (which I was already on for HTN) increased to 50 mg. Since May 2017, have lost over 25% of my body weight, so far, changed my diet and exercise, drinking a lot of H20, starting to watch Na+ intake, likely not enough Ca++, a work in progress. Many other lab test results have greatly improved. I am now tending to mild hypokalemia, no doubt diuretic-induced, and would like to get off the higher HCTZ, rather than add yet another med, KCl, to my list to compensate. Second 24 hr urine in Nov 2017, urine volume 3.75 L, pushing fluids for impending URI and for weight loss. I was told to cut back a bit on H2O and repeat test in one year. Is it possible to ever get off these meds, once they have been started? Can you take the K citrate without the added HCTZ? If so, are you still seeing patients? Please advise, and thank you!
Fredric Coe, MD
Hi Joyce, I do understand the questions as a bit specific and also important. Yes, I do certainly see patients and in your case if you wish just call my secretary and come in with your data so I can be more helpful – Kathleen Dineen, 773 702 1475. Regards, Fred Coe
Susan Sullivan
Hi Dr Coe, would this course be useful for me, in that, I have a 9 year old Bichon Frise/Shih Tzu with CA Oxolate Stones, I have an analysis from Guelph University. I’m reading the comments here, and wondering if diet and or tests, could assist me in developing a die for Rio, that will reduce the chance of CA Oxolate stones to return. I’ve read that kidney function and how it uses Calcium or doesn’t process it properly can dump excess Calcium into the bladder, which then binds with the Oxolate. I am devising low Oxolate food for him, but I need to know how to ‘stop’ the Calcium from binding with the Oxolate. Thank you.
Fredric Coe, MD
Hi Susan, Stone disease in non human animals is a specialty in veterinary medicine, and far outside of our skills. Regards, Fred Coe
PC
My vet recommended a special food for my bichon. She has not had a stone since and it has been years. I can’t remember the name of it and I keep food in a bin so I don’t have the bag, but ask your vet and if he does not know, google it. Good luck.
Fredric Coe, MD
Hi PC, I am happy for your experience but need to make clear that veterinary medicine is as far from me as Venus or Mars. Everything is different for animal stones vs. human, and I have no knowledge at all about the former. Moreover this site is not relevant to animal stones. I say this to be sure no one is mislead and therefore no animal is harmed. Regards, Fred Coe
Jason
Hi Dr Coe, I follow and talk to Jill on Facebook. I asked her and she felt you may be able to answer this question. How does Testosterone Replacement Thearapy (injections) affect the kidneys or stone production. Would steroids have the same effect?
I produce calcium oxalate stones but I’ve been following my diet closely to prevent forming new stones.
Fredric Coe, MD
Hi Jason, Testosterone could alter urine pH or possibly calcium, although papers are pretty hard to find on this subject. In a highly contrived mouse model the androgen receptor seems to alter oxalate production by liver challenged with oxalate precursors. On the other hand, in menopausal women who formed stones or not, it was estrogen, not testosterone levels that correlated with stones. Among men with stones compared to normal men, serum testosterone was higher – a point in favor of the hormone as a cause. But that paper is very weak. So, poor science, little known. If you do not need the hormone stop it, otherwise, continue. Regards, Fred Coe
Beverly Dow
Hi Dr Coe
you prescribed 1200mg daily calcium for me at our October visit. I am having trouble getting to 1200mg due to IBS and inability to tolerate whole milk products without pain. I have been eating daily greek yogurt, coconut milk, low sodium cottage cheese, string cheese. Can you recommend a calcium supplement. I noticed there are several types. Which is best for me. I have lost 25 lbs. I am on low sugar, low oxalate diet and exercising.
Thank you
Kevin G. McAree
I am a 62-year-old male whose first kidney stone was discovered in October, 2016. That is when my kidney cancer was found also. Though it was classified as Stage 1B, I am now considered Stage 3 CKD. Now I have to watch my sodium, potassium, phosphorus, and protein intake as well as my oxalate levels. I am looking for a diet program that takes all of this into consideration.
Fredric Coe, MD
Hi Kevin, given CKD 3 you do not have to limit your diet potassium or phosphorus but simply avoid excesses. Protein intake can be in the normal limit of 0.8 to 1 gm.kg/day. For your kidneys stones, prevention should follow a complete evaluation for causes, so be sure that has been done. The courses are available as per the link from this article. Let me know if you have trouble contacting Jill Harris who runs them. Regards, Fred Coe
Kevin G. McAree
After my surgery, my Creatinine was 1.35. I had the 24-hour urine test done in June. My 24-hour Creatinine was 3.32, eGFR was 56, potassium was 4.1, sodium 142, calcium 192 oxalate acid was 56. Nephrologist told me to eat more fruits and vegetables and less meat. Will the course still help?
Fredric Coe, MD
Hi Kevin, Your serum creatinine is a bit high but your 24 hour urine creatinine is mammouth. If the collection was accurate for 24 hours you have a very large muscle mass. The creatinine clearance (liter/day) is urine creatinine (mg/d)/serum creatinine (mg/l) which is in your case 3320 mg/d/13.5 mg/l or 245 l/d, or in ml/min which is what is usually calculated 171 ml/min. The eGFR equation assumes a urine creatinine but for people with so much muscle mass as you appear to have (normal urine creatinine is 1600 to maybe 2000 mg/day) your serum values gives a reduced clearance. The other possibility is that you are giving me a 48 hour urine creatinine or somehow over collected. Likewise your urine oxalate is very high, and perhaps that is also a collection artefact, or perhaps real. In any event your nephrologist might want to look at the urine creatinine and consider if the collection is correct. Regards, Fred Coe
Susan Buckner
I just finished my sixth lithotripsy over the course of about 12 years. My first stones were tested and were calcium oxalate. I am a recently retired RN and need to get serious about prevention. I hope to sign up for the class.
Fredric Coe, MD
Hi SUsan, Too many ESWL procedures and prevention is indeed right for you. The course is terrific. Here is a plan to read about. Bests, Fred Coe
Beverly Dow
Dr Coe
I was in an auto accident 3 years ago. I had blunt trauma (bruising and contusions) to the right kidney with no penetration. Several weeks after accident upon routine blood and urine I was found to have blood in urine and elevated uric acid, kidney function tests. Referred to urologist for ct scan, 24 hour urine. Regular xray did not show stones, so they were assumed to be uric acid stones. No stones collsction or analysis done. Ct scan showed several kidney stones in right kidney. Put on potassium citrate er 15meq 1 tab 2x daily, theralith xr 2 tablets twice a day, increase fluids. I started to experience kidney stone attacks within 2 weeks and have had 5 attacks so far.
Recent ct scan still shows stones present in rt kidney. Prior to auto accident no hx of kidney stones. Had ct scan several yrs prior to accident prior to colonoscopy that showed no stones.
Do you know of any association of blunt trauma to kidney from an auto accident that caused damage and subsequent formation of kidney stones. My current age is 72. Thank you
Fredric Coe, MD
Hi Beverly, The best guess is some kidney injury from the accident, loss of some kidney function, lower urine pH, and uric acid stones. They should stop with potassium citrate but all is in measurement. What were the 24 hour urine pH values before treatment? How about during that treatment. What else is wrong in the urine chemistries? On CT your physicians can ascertain uric acid by the magnitude of radiographic density – anyone can do it. Uric acid has a low density. Be sure you have been fully evaluated. Regards, Fred Coe
Beverly Dow
You prescribed daily 1200mg calcium intake for me in my October visit with you. Having trouble getting to 1200mg daily due to IBS. Have been eating daily greek yogurt, coconut milk, low sodium cottage cheese, string cheese. Can you recommend Calcium supplement to help make up the difference. I understand there are more than one type of calcium supplements. I am also on low sugar, low oxalate diet. Have lost 25 lbs.
thanks. Could you reply to my email account. I have trouble finding your replies again.
Beverly Dow
Fredric Coe, MD
Hi Beverly, I will reply to you personally. Regards, Fred Coe
Denise Alexander
Jill thank you for your quick reply. Can you tell me what time and what day of the week you will be having the calls? I live in California and work full time so I want to make sure that it is on a day and time that I can call in. Also if we have to miss a call will there be a recording available? I’m looking forward to joining the class.
Denise Alexander
Is the Kidney Stone Prevention course still being offered? If so how can I get more information?
jharris
Hi Denise.
Yes it is and it’s been very successful. You can go to jillharriscoaching.com/course to sign up. A new one will be starting in the next couple of weeks. They fill up quickly so sign up soon!
Warmly,
Jill