By Jerry D. Haight
In 1901 Archeologists discovered stones in a 7000 year old Egyptian mummy. In the 8th century B.C., the fact was further corroborated by writings describing surgery for stones and drawings made of the urinary anatomy. Yes, we know kidney stones have afflicted humans since the dawn of history.
In the 4th century B.C., Hippocrates specifically mentioned stones in his Hippocratic Oath. In that , he said: “I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.”
He was warning physicians not to participate in surgery because of the extreme danger. Most of the time it was unsuccessful anyway and, often with deadly results. Then, most surgery was performed by barbers. Hippocrates could not have used a better example of a worst case scenario than the term "sufferers from stone".
I try to keep this in mind when in the throes of passing one of these prehistoric ancient reminders of our humanity. And while thankful of not having to rely on my barber for aid, it often appears modern solutions are not necessarily more effective. As an aside, if evolution is real, why are we humans still contending with these nasty stones? And why is there seemingly no information about kidney stones in primates, our supposed evolutionary ancestors?
Passing one of these things is an unforgettable experience. Symptoms begin as a vague, achy and sometimes gnawing, chronic discomfort in either the left or right flank, depending out of which kidney the stone originates. The first phase can last several weeks and ranges in intensity from mild discomfort to agonizing misery.
The second phase is far more severe and intense. Gone are the mild discomfort and agonizing misery. Gone also is the vague achy and sometimes gnawing pain or discomfort. These would be a welcomed reprieve from the excruciating sharp breath taking waves of pain caused by the jagged primeval object as it cuts and claws its way through the ureter. This phase can also last from days to weeks with no apparent relationship between stone size, degree of pain or how long it lasts.
The last phase is the trip through the urethra which is probably like cleaning the small tender passage with an oversized wire brush. But, fortunately, if all goes well, this part can take a few minutes or days. Hippocrates might not have used a knife on a sufferer from kidney stones but if he were that sufferer in this last phase he might have considered a straightened coat hanger.
Statistics about stones is sparse but depending on the source, somewhere between 2 to 10 percent of the US population has had a kidney stone in their lifetime. Of those, maybe half have or will produce a second within a decade of the first. This statistic would make any so called cure at least 50 percent effective. While statistics vary, there is complete agreement among those who have had one or two stones the experience is unforgettable and very painful. Among sufferers are those rare individuals who might be termed "chronic stone makers". They persistently produce stones on a regular bases, even many stones per year. For this small population, dealing with this disease can be quite daunting and a lifelong avocation.
My avocation of stone passage began in April 1970 when a 2 cm stone was removed from the right kidney by Dr. Burns, a California urologists. This memoir does not discuss the many trips to the ER preceding the event, the miserable week in the hospital, the head nurse (sister of Dracula), the month absence from work recovering, the loss of income, the disallowance of insurance coverage or the economic hardship lasting more than two years.
Since that unforgettable event, more than 200 contentious stones (those requiring pain management or surgical intervention) and maybe several hundred non contentious stones (those passing unnoticed) have passed through my passageway. This is however, by no means a Guinness candidate inasmuch as one unfortunate man passed four thousand five hundred and four validated stones ranging in size from a grain of sand to that of a dried pea, so much for going down in history. Information about size of stones passed is quite meager, but most sources claim stones larger than 5 mm are impossible to pass. A glance at a model of the urinary track would confirm that supposition. But those sources are incorrect and perhaps some of my 9 mm stones would qualify for Guinness after all. Ouch!
After my first one, four or five contentious stones per year made their appearance. Each bore the characteristic intense and unbearable pain. The only venue available for help with the pain was an emergency room (ER). Travel time took about an hour, the ordeal involved many hours of waiting before receiving an injection, then an hour wait to check for adverse reactions and another hour drive back home. Demerol by injection was usually the medication used by the ER staff to control the pain. The injection usually lasted four to six hours, leaving the situation virtually unaltered and then back to the ER again. One stone could entail half dozen or more such trips. None were frivolous; all very serious; all very expensive.
Kidney stones are rarely fatal and a high percentage ( about 98.5% in my case) pass of their own accord without any help other than pain medication. Other than ruling out a variety of serious maladies that can mimic the symptoms of a kidney stone, there is little to be done at the ER other than administer a fast acting pain medication and perhaps dispense minimal doses of oral medication. Accordingly, sufferers of kidney stones find only temporary relief of his/her distress in the ER. After the visit, the patient, already frustrated enough by the worry about blood and pain caused by the stone, can face the prospect of waiting weeks for an appointment with a urologist.
The urologist already knows that most stone will resolve themselves within that timeframe so there would be naught to do anyway. But, nevertheless, this scenario leaves an unresolved issue of pain management. In this regard, much of modern medical science is little improved from the time of Hippocrates, not because tools do not exist but rather access to them is almost always extremely difficult.
Managing the intense renal colic (pain) with narcotics such as codeine, morphine and Demerol has proven quite effective in suppressing pain, however these same drugs come with potentially serious repercussions or side effects. Fear of these is one of the reason intra muscular or intravenous use of narcotics is mostly confined to the ER or hospital and rarely offered to out patients. In my case, due to the frequency of kidney stone production, the issue of effective pain management became more and more egregious. A better solution had to be found. And it was.
After the resection of another kidney stone two years later, Dr. Burns reviewed the (extensive) records of ER visits and offered intra muscular (IM) Demerol as an alternative to the ER routine. The benefits were clear but his discussion of the risks and side effects sounded like modern medical and legal disclaimers on medication advertising. While the potential risks sounded ominous, the continual passage of stones was seriously impacting my life. But even as the doctor discussed the new alternative, my mind was formulating how it might be implemented. Then, with my assent, Dr. Burns ordered a vial of Demerol from the pharmacy.
As it happened, Carol Dirkse, my primary care physician's (PCP) medical assistant lived three doors from us. Our families were close. Phyllis child sat Carol and Dave's children who were the same age as our kids, our families attended church and recreated together. Carol was amenable to administering my injections as needed and for several years Dr. Nitler prescribed IM Demerol and Carol administered it. What used to be hours in the ER at a very expensive cost was reduced to a phone call, a few minutes and the only cost was less than 50 cents per dose. The neighbors might have considered it strange that Carol and I would sometimes meet in the middle of the night at one or the other's house, but the arrangement was a godsend. Over time, Carol taught Phyllis to give injections and later I found it more comfortable to give my own.
As career moves required our family to move across country, this arrangement became impossible to maintain and so back to the ER routine. Through the University of Alabama Urology department, a precious urologist came on board and prescribed the IM Demerol and in the process tried to see if we couldn't mitigate my stone production. His work mirrored that of Dr. Palmer of the University of California's Urology department and it too made no discernable difference. I just kept on producing stones.
Then another career move found us in Spokane as I became the Executive Director of the Public Transit District. The District had an HMO plan through a major clinic and nephrologists there thought they could resolve my stone production. With hope renewed we did a third study. I just kept on producing stones.
At the clinic, Dr. Mark, my PCP prescribed IM and oral Demerol. He was well aware of the high cost and low efficiency of going to the ER and although he never complained I sensed he was somewhat uncomfortable with the arrangement just as I felt uncomfortable having kidney stones. That was until he produced a fairly large kidney stone himself. Dr. Mark told me while passing his, he had an ultrasound that turned up negative and a CT report concluded there was no stone present. While I know he went through agony, secretly I was blessed right down to my socks. Suddenly, prescribing Demerol became well within his comfort zone. I sometimes wonder how history might have changed had Hippocrates suffered from kidney stones himself.
The cycle of my stone production remains somewhat predictable, give or take a month or so. Even though I can keep pain medication on hand, I still on occasion show up at the ER. First, I am uncomfortable asking for these meds so tend to under request. Then, after one stone session nearly depletes my supplies, I sometimes run out during the next session because of my own procrastination (denial) to replenish.
Some stones require more than expected meds and I run out. Occasionally even though I have pain meds on hand, I get scared because of the duration of passage is beyond my comfort zone and seek help. Then, the advent of weekends and holidays, the schedule of prescribing doc, and the pharmacists supply logistics, can gang up also resulting in an occasional visit to an ER, out of meds.
Noticeably the ER experience continues on a downward spiral as patient volume increases, funds decrease and other resources become stretched. Also, the apparent proliferation of those professing colic when in fact the issue may leans more toward drugs rather than pain management seams to diverts much attention to detective work in attempt to determine the differences. This part of triage appears in much professional literature.
One recognized paper on Diagnosis and Initial Management of Kidney Stones uses considerable amount of ink on the subject of detective work to ferret out those whom physicians suspect of having fictitious colic. It also propagates assumptions that contradict practical experience and results in inappropriate responses. As an example, a false assumption that a non contrast helical computed tomography (CT), a relatively new modality is capable of unerringly excluding kidney stones in presumably problem patients propagates treating such patients as "just another addict" and not to be taken seriously. Dr. Mark's example, the testimony of my son (also a chronic stone maker) and at least three documented instances show this assumption blatantly false and very unfortunate for those patients who have genuine kidney stones.
Being part of a very small population my solution is perhaps "outside the box" It begins with recognizing that ERs are very time consuming and expensive (Over $4000 per visit depending on tests run (necessary or not) vs. about $1.50 for a dose of Demerol). A key to pain management is to first develop a strategy that works, be thoroughly knowledgeable about the risks and benefits weighing each carefully , then continuously document history with as much pertinent information as possible and, lastly, marshal the resources that support the strategy.
The strategy is to manage chronic ache (phase I) includes Tylenol and hydrocodone depending on the severity. When pain becomes more intense as the stone moves further down the ureter (phase II), inject Demerol for breakthrough (BTP) pain and oral Demerol to manage acute pain over a longer period. In deference to Phase III, just get out the coat hanger!
My documentation includes narrative, relevant family history information, reports of urologists, nephrologists, copies of ultrasound, IVP, CT and PET reports, photographs and pain charts. The documentation also includes a written strategy for management of pain.
Marshalling resources involves a PCP who, in addition to his/her other tasks of monitoring my physical well being also monitors and prescribes the medication used in managing pain. In making an appointment with a prospective medical provider it is always best to be honest, prepared and direct. I have heard the comment "we don't subscribe to . . . (whatever), but sooner or later, a strong partnership and bond has always resulted and presumably always will.
Fortunately, my kidney stone cycle allows for periods of relief. About every three or four months, phase I begins ending three to five weeks later with phase III. Then, voila, a time of rejoicing with two or three months free of pain and discomfort. . . until the next time.
One of the most common questions include "why don't you just go and get them zapped?" The question referrers to a procure using the lithotripsy. For those qualifying stones the process is amazing but not without its own issues. A stone first must be opaque (many are not) so that size, and location might be determined. If it is not in the upper portion of the ureter or the pelvic area of the kidney or is larger than 1/2" it is not a good candidate for lithotripsy. A urologist (remember scheduling?) must also make the determination that it is not likely to pass on its own. While the procedure is most successful on struvite stones, (formed by bacterial waste related to a kidney infection) the procedure is still applied to other types of stones. Often a stent is inserted to prevent passage of the stone while awaiting the lithotripsy (often transient, requiring scheduling) so that the lithotripsy machine can sends out numerous high-