Kidney stone prevention course: Illustrated by Raphael School of Athens

KIDNEY STONE PREVENTION COURSE

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?

Dieticians

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.

26 Responses to “KIDNEY STONE PREVENTION COURSE”

  1. Marlene Dexter

    I had an intestinal bypass in 1973 for obesity. I lost 125 lbs and with monitoring my food
    intake, I manage to keep the weight off. A year ago I was diagnosed with kidney stones
    in both kidneys…small ones on the left and one large one on the right. I have not experienced pain and I am monitored by a urologist twice annually. Is this related to the
    surgery I had 44 years ago?

    Reply
    • Fredric Coe, MD

      Hi Marlene, Off hand I would guess they are, in that bypass surgery often raises urine oxalate considerably. I would be sure to have proper 24 hour urine studies to measure all stone risk factors with especial interest on urine oxalate excretion. Sometimes the urine oxalate is very high, and that is important to deal with. Regards, Fred Coe

      Reply
  2. Krishna

    Respected Sir,
    I would like to know if hyperthyroidism(thyroid gland not parathyroid gland) cause kidney stone

    Reply
    • Fredric Coe, MD

      Hi Krishna, hyperthyroidism does indeed cause kidney stones via increased urine calcium. It needs to be treated on its own and as a cause of stones. Regards, Fred Coe

      Reply
      • Krishna

        Dear Sir,
        How would I differentiate between whether the hyperparathyroidism or hyperthyroidism caused the kidney stone

        Reply
        • Fredric Coe, MD

          Hi Krishna, The hyperthyroidism is treated first, and treatment is monitored by your physician. When it has been controlled, he/she can determine if your serum calcium is high and if so if serum PTH in that same serum is high or normal – not low, and that your 24 hour urine calcium is high. This fulfils the criteria for hyperparathyroidism. This matter is very complex and managed exclusively by your physician. Regards, Fred Coe

          Reply
  3. Sheila Nichols

    I have completed the kidney stone prevention course and it was very informative and helpful. I also had an appointment with Dr Coe last October and I can’t tell you how much I appreciated his kindness and caring and explanation delving into my kidney stones. I have changed my diet significantly and realized that I wasn’t having the calcium I needed to prevent new stones. I have a question regarding magnesium- should I be concerned about how much magnesium I need because I have increased my calcium intake ?? I repeated my 24 hour urine yesterday. Fingers crossed for improved results !

    Reply
    • Fredric Coe, MD

      Hi Sheila, thanks for the kind words. As you are my own patient, we will meet when you have your new results and I can help decide about the extra magnesium. Regards, Fred

      Reply
  4. Dave Monk

    I watched the webinar with great enthusiasm, Dr. Coe. It’s no surprise what she talked about is exactly what you and I discussed a year ago, when you did a thorough blood/urine analysis and put me on the right track regarding diet, fluid intake and medication. So far, so good. No stones to date!

    Reply
  5. Terri Jensen

    First, I’d love to watch the class but I can’t attend during work hours. Will it be recorded so we can watch it later?

    Second you have to keep in mind everyone is different. There is not a one size fits all diet because most of us have some sort of restrictions. For example, I need to avoid lactose and foods that aggravate reflux including lemons so I can’t have lemon water. I also have limitations having had my gallbladder removed. And that’s cooking for me alone and not counting cooking for the rest of the limitations of my family.

    Reply
    • jill

      Hi Terri,

      Exactly. No diet does fit all. That is why leaving your doc’s office with a generic “go on a low oxalate” diet won’t work. The kidney stone prevention course is a place where you can ask about your certain medical conditions and other restrictions.
      The webinar will be recorded so no worries if you miss it live!

      Jill

      Reply
  6. Rachel

    I would love more information about this. I have been passing stones since I was 17. I am now 32, and have passed well over 200 stones! I pass at least one a month and am in constant pain. I have seen so many doctors, all without much hope, answers, or a real understanding of WHY I have so many.

    Reply
    • Fredric Coe, MD

      Hi, The Webinar in Thursday is a good way to hear about it. Regards, Fred Coe

      Reply
    • Lynn Pommerening

      Rachel,
      It’s sad that your physicians haven’t taken the effort to find out your specific cause of stones. My personal opinion is that they make too much money on your return visits. I’ve talked to many many people who have been told by their physicians that they are “just one of those types of people who are going to form kidney stones”. These prognosis are a sad testimony to the medical field, especially when there has been PLENTY of research and deeper understanding on causes and effective treatments for kidney stones. It may be time to find a urologist who will analyze what is actually going on in your body. Be sure to read Dr.Coe’s other writings about kidney stones and studies done on treatments for kidney stone prevention. Too many “remedies” only target kidney stones when they form. It’s more important to understand 1. why your body is forming them 2. what type of stone(s) you form 3. finding a solution for PREVENTION. I wish you well and best of luck in your endeavor to find relief. You’ve landed on a very informative and helpful site.

      Reply
  7. Barb

    I’ve tried to register for the course and it keeps giving me an error. It tells me that my email address is already in use. So I request password help and it tells me it doesn’t recognize my email. Is this a test? If so I’ve failed. Happy Valentines Day! Staying away from Chocolate! 💝😞

    Reply
    • Fredric Coe, MD

      Hi Barb, I am sure you registered – But I will ask Jill to check out your comment. Regards, Fred Coe

      Reply
    • Hi jill

      Barb,

      Sorry for you trouble. I had another tell me that as well. this belong to you- gbtorcaso , if so you are registered?
      See you tomorrow!

      Jill

      Reply
  8. David Spurlock

    I am a 30yr retired military officer. I experienced my first stone while driving cross country for a change of duty station in 1988. More recently, in 2015, I passed another stone and during the imaging, they discovered an eight mm stone in my left kidney. In 2016, the eight mm stone had grown to ten mm and a four mm stone appeared. Eventually I passed and retrieved the stone and turned it in to my healthcare people. The ten mm stone had to be lasered.

    The reason I am sharing all of this is because my healthcare provider is the VA. Needless to say, most of the stories you have heard on TV about the VA medicine – I have experienced. Specifically, the Urologist that lasered the stone recommended to me to have a 24 hr urine sample test. I collected the sample, turned it in to the VA hospital and have heard bupkis since. My Urologist (not the one who did the laser) continuously bemoans the fact that he has not retired and even asking his nursing staff about the results of the test have proved fruitless.

    Meanwhile my anxiety over my propensity for stones grows and so far I have no intel from the VA. Thus I am trying to take care of my situation unaided by the VA. That is why I intend to enroll in this coursework identified in this post.

    Thank you very much for your patience in reading my tales of woe.

    Very respectfully,
    Dave

    Reply
    • Fredric Coe, MD

      Hi David, I know the VA has a lot of stories. The course will no doubt help you but you will need physicians, too. Good luck, Regards, Fred Coe

      Reply
    • Hi jill

      Hi Terri,

      Exactly. No diet does fit all. That is why leaving your doc’s office with a generic “go on a low oxalate” diet won’t work. The kidney stone prevention course is a place where you can ask about your certain medical conditions and other restrictions.
      The webinar will be recorded so no worries if you miss it live!

      Jill

      Reply
    • Hi jill

      Hi David.

      Thanks for writing. Look forward to having you in the kidney stone prevention course. It will help you tremendously. Please try and get a copy of your report before class starts. You don’t need it but it would be nice to have so I can take a look at it.

      Talk soon-

      Jill

      Reply
  9. Patti Bonevac

    I am looking forward to the Kidney Stone Prevention Course! I have registered but I didn’t see where I can request the oxalate list.

    Reply
  10. Kim gallagher

    Very excited about the webinar. Did not realize Jill was offering specific course work on kidney stone prevention. I agree that follow-up is critical. If I am to be successful with my program, I need to check in at least once a year. This way I know my numbers are good and I am staying on track.

    Reply

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