CHAPTER ONE

The Kidney Stones Handbook
ISBN 0-9637068-6-1

The Pebble That Hurts

The sudden wave after wave of searing, ripping pain from an unexpected kidney stone knocked the wind out of me.

It was the kind of pain I would soon learn that some emergency room nurses tell their patients, both male and female, "you are now going through labor pains with this one!" I could handle two caesarean births, but the pain of a kidney stone was the worst pain I'd ever felt.

A stone that forms in the kidneys and blocks the urinary tract is probably the single most painful disorder to afflict human beings.

Only a few hours earlier, I thought I was developing a bladder infection (although I had not had one in a decade). I was not ready for the hot, knife-like, wrenching pain that continued to slash through my left side, migrating down into my lower abdomen. I thought if I could lie down on a heating pad and not move at all, the pain would diminish.

In addition to the pain came round after round of nausea. I became "addicted" to the toilet while vomiting, and within a short time, I felt extremely dehydrated. Along with the sudden onset of pain up and down my left side, I felt my bladder spasm with painful cramping and yet I was unable to urinate.

I didn't know whether to stand up, sit down, lie down, or die.

-Gail Savitz, author

My primary care physician's office would not open for another two hours. Should I go to the emergency room? I decided to wait and see.

As I counted out those endless minutes on that cool summer morning, I had become a new statistic: I was now one of more than 1.2 million Americans who would develop a kidney stone in any given year, and more than 30 million over a lifetime.

Most of these stones range in size from a pencil point to the size of a golf ball and can cause agonizing pain in the lower abdomen and back.

I should have gone to a hospital emergency room immediately. This was a new experience and I tried so valiantly to play down the severe pain I was feeling. It was all in my head, right? And who would step in and take care of my own children who were sound asleep in the early morning? A patient can expect a small amount of blood in the urine from minor trauma caused by the stone.

When should a person call the doctor?

Call your doctor or go to the emergency room if you experience:
  • Severe pain not controlled by oral pain medication.
  • Fever
  • Visible blood or clots in the urine
  • Persistent vomiting.
  • Inability to take oral fluids.
  • Severe or persistent diarrhea.
  • You have a history of a solitary kidney, renal failure or are currently pregnant.
You can not make the diagnosis of kidney stones yourself. Even if you're sure the pain is identical to your last stone attack, you could be wrong and have to suffer the consequences if it just happens to be your appendix.

As the family's breadwinner, I had no time, nor patience to become ill. I was a single mother with two children and I did not want to scare them. I thought the pain was "all in my head" and I really wasn't as sick as I felt.

What I didn't know was that I had embarked on a journey of cold fear, obnoxious pain, high medical expenses that would leave me strapped financially, unknown procedures and tests that left me terrified with very little knowledge or understanding about the "pebble" that hurt so much.

It was a journey that began with no control over my health. It seemed that my body had become my enemy. After extensive research in countless medical and public libraries, I have begun to understand kidney stone disease. I am able to ask my urologist "intelligent" questions and I feel fortunate to have found a physician who is willing to take the time to answer them all. As I began my own medical research, I realized the information I collected would benefit other patients with kidney stones. Thus, from a seedling of information grew a book for all kidney stone patients.

Kidney stones are a life-long ailment. If you have kidney stones, or you know someone who does, or there is a family history of kidney stones, then this book is for you.

Tales of Torture:

My First Kidney Stone I had been sitting quietly at my computer editing a client's book on parenting. I enjoyed working in the early morning hours before my children, Gary, who was then 12 years old, and Jennifer, then 9 years old, awoke.

When the first kidney stone made its torturous journey down my ureter, I had two health-care options. I could use the large health maintenance organization under which I had health insurance, or consult with the friendly, young physician who had gotten to know me well over the past seven years but whom I would have to pay entirely out of my own pocket.

At that moment of ultimate agony, money had no meaning for me. I would go to whichever medical office answered the phone first.

I desperately tried to get through to the HMO's phones that morning. I kept getting a busy signal. My pain was too intense (and I had no patience under those conditions) to keep trying the appointment line, so I called my internist. They booked an appointment for me within the hour.

While I was in no shape to drive a car that morning, I made an unwise decision to drive. I took my son along as my "comfort blanket." He was completely bewildered and scared by my pain, and there was little that he could do other than be there for me. Each bump in the road was like a sword through my side. Both of my children were scared that I was going to die. It was equally difficult to leave little Jennifer home alone.

My physician immediately took an office X-ray. It was the first of hundreds more to come over the years. When he came back into my examining room, he told me I was passing a kidney stone.

At that moment, it was the worst news he could have given me.

Visions of My Mother

His news that I had a kidney stone upset me greatly. Not only did my mother have kidney stones, but also my paternal grandmother. And my brother has passed two or more kidney stones in a single month! I remembered how as a young girl I had watched my mother endure horrendous pain with her own kidney stones. Growing up, I saw the long scars on her back from kidney surgery. I remembered how much I missed her when she was hospitalized.

I grew up fearing my mother's pain without understanding it.

Finally, at age 38, I was horrified to be told (in my own heightened state of anxiety) that my mother's pain had become mine as well.

According to the National Institutes of Health (NIH), in the past it was true that little could be done for most patients with stones. "With a surprising lack of fanfare," wrote a noted scientist recently, "recurrent renal stones have become a preventable disease." There was existing treatment for some of the rarer forms of stones, but patients with the most common kinds of kidney stones faced the prospect of drinking a lot of liquids and the likelihood of surgery. They were told to avoid calcium in their diets. Not until the mid-1990's did researchers realize that for many stone sufferers, lack of calcium in the diet actually contributed to stone formation! What I did not know the day my first stone hit me was how far medical science had progressed since my mother's own fight with kidney stones with advances in diagnostic Xray techniques, non-invasive surgical treatment, risk factor analysis and new preventive care over the "stone age" medical management she had received some 35-years earlier.

Today, scientific progress has brought greater understanding of the causes and mechanisms of stone formation and far more effective clinical management of stone disease.

My internist told me that my kidney stone, due to its size, could become a life-threatening situation. He told me that it was important I go back to my HMO and demand the care I desperately needed, along with additional medical tests to fully evaluate and hopefully prevent future stones.

"If you can't find someone to drive you, we'll need to call an ambulance for you," my doctor told me.

Learning to Ask for Help

While I didn't want an ambulance, I also didn't want to disturb any of my friends who were working. I didn't think it was fair to take them away from paying jobs on my behalf.

This attitude was one I learned to change. Over the next three years, I learned to ask for help when I needed it. I got tired of leaving my car in the hospital parking lot when I was admitted as a patient, and asking other people to drive my car home for me.

Instead, I learned to ask friends to spend the night with my two children, and I learned that sometimes it was necessary to call a friend in the middle of the night for a ride to the emergency room. People were more than willing to lend a hand to help.

A nurse called a friend for me. During the hour I waited for him to arrive, my doctor administered two shots for pain and I settled down on his examining table. At long last, I was able to lie down and relax. The pain medication made me less nauseous and the hot, knife-like pain in my back subsided until I arrived at the hospital.

My friend decided to drop off Gary at home before taking me to the hospital. I tried lying down in the back seat of the car and during the entire trip I vomited continuously into a plastic garbage can liner.

Symptoms of Stones

Some people have "silent" kidney stones which produce no discomfort. But most stones cause pain so severe that it's unforgettable. The pain may come in waves that begin in the lower back and move to the side or groin.

Most people can correctly identify the exact site of their stone just by pointing to where the pain is worst.

The severe, constant pain continues as the muscles in the walls of the blocked ureter try to squeeze the stone along into the bladder. The pain is unrelated to the size of the stone and is not caused by the stone "moving" or scratching as many people believe. In fact, the pain is caused by the dilating or stretching and cramping caused by the blockage the stone produces when it gets stuck in the ureter. (The ureter is the muscular tube that drains urine from the kidneys into the urinary bladder).

When the urine produced by the kidney cannot pass the blockage, the ureter and urinary system stretch. The ureter is composed of muscles and will contract or cramp when stretched. This stretching, dilating and cramping is what causes the intense pain.

This also explains why the stones usually don't cause pain when they are just sitting inside the kidney. Since they don't produce any blockage, stretching or dilating of the urinary system, they don't usually produce any pain until they pass out of the kidney and get stuck. The degree of pain is unrelated to the size of the stone, so it's possible to have excruciating pain from a stone smaller than a grain of rice.

Sometimes the patient will find blood in the urine, and may experience a burning sensation during urination, or frequency of urination.

Other symptoms of stones include nausea, the presence of urinary infection accompanied by fever, vomiting, loss of appetite, and chills. The patient may find that his kidney and abdomen in the region of the stone are very tender to the touch.

At the hospital, my friend gave the receptionist my medical information. I spent most of the time vomiting in the restroom. When I returned to the waiting area, there was a wheelchair waiting for me. The severe pain, however, prevented me from relaxing long enough to sit in the wheelchair for any length of time.

The Emergency Room

While standing up against the hospital's wall, I noticed how cool it felt against my hot back. For the next 40 minutes, until I was taken into the emergency room, I virtually climbed the wall with my back. I am sure others in the emergency room found my antics humorous; for me, the wall's coolness seemed to help me tolerate the pain.

When my name was finally called I was led to a gurney. The gurney became my cocoon for the next fourteen hours. I arrived at the hospital during the cool summer morning hours and would leave after darkness had enveloped the river city called Sacramento, California.

The hospital first placed a white patient identification band around my left wrist. From that moment on, I knew I was in serious trouble.

I was given intravenous pain medication (medication that is injected into a vein) and saline solution to replace nutrients lost from vomiting. I could absorb fluids through the IV hookup, but I was given nothing to drink in case I required emergency surgery.

I began to feel the pain medication as it worked its way, first through my lower back, and then as it settled into my shoulders. Within minutes, the pain from the stone was nearly gone. I thought it was possible at that moment that life could continue-maybe.

The IV needle would be helpful as the day progressed and other tests were taken.

The emergency room physicians led me through a maze of tests in order to perform a medical evaluation. It was important they find out exactly where the stone was, its size, shape, and determine what kind it was in order to plan any further treatment.

If the stone was too large to pass, I would require surgery If it was not life-threatening I could undergo, at a later date, a new stone-crushing method called lithotripsy (ESWL). In some cases, special medications, depending on the type of stone involved, might dissolve the stone.

The X-ray taken in the physician's office had established the presence of a stone. The emergency room physicians, however, performed a quick analyses of my blood and urine to help determine the cause (if any) of this crisis, identify any infections and to plan the proper course of treatment.

More X-rays were taken of the stone.

In most cases, if the stone is small the patient usually needs only pain relief and instructions concerning recovery of the stone after it is passed. If the stone is smaller than 5 mm or about 1 /4 inch in diameter, then it will probably pass without surgery. If the stone is greater than 10 mm or about 1 /2 inch in width, then it almost certainly will not pass. Whenever possible, urologists usually like to give the stone every chance to pass without resorting to surgery (see page 159).

Whether one is at home or in an emergency room, it is important to "catch" the stone. "Stone catchers," usually cone shaped cups with cotton or mesh-like filters, are used to help strain the urine. The patient urinates through these cups and, with luck, the stone will be found lying on the filter's bottom. (I have often felt like an early gold miner looking for treasure at the bottom of the pan!). Paint strainers also work, but my favorite stone catcher is an aquarium net usually used for goldfish.

A year later during another kidney stone crisis, the stone snagged itself on my skin as I went to the bathroom and I was able to retrieve it with toilet tissue. It's sharp-sided edge felt like a rose thorn.

Sometimes in a busy emergency room, a nurse may forget to give the patient a cup, or stone catcher, in which to catch the kidney stone. This has happened to me on two different occasions, and the stone was never found. It is very important that patients ask for this mesh-like strainer before they empty their bladders.

Catching the stone helps the physician determine treatment and develop a prevention program. A chemical stone analysis may suggest the cause of the stone by identifying its composition.

Every patient with a possible kidney stone will require some type of imaging study of the urinary tract. The most common forms of imaging are ultrasound, intravenous pyelogram (IVP), retrograde pyelograms and computerized tomography (CT) scans. Other studies, such as a single flat X-ray of the abdomen (called a "KUB" for kidney, ureter and bladder) and especially plain tomograms of the kidneys are useful in following the progress of the stone disease. (These will be reviewed in a later chapter.) A patient's first IVP can be a frightening experience. However, I have found that helpful technicians or physicians who have administered the IVP while standing next to the patient can reassure an anxious stone sufferer by explaining the procedure and what to expect.

The IVP has been the gold standard for diagnosis of kidney stones for many years. It is now being replaced in many institutions by CT scans which are faster, safer, and more likely to help make a diagnosis if a stone is not present.

I felt the IVP solution travel through my vein. It felt cold at first, and within a few minutes I could feel a metallic taste in my mouth. The physician stayed with me and told me what I might expect. This lessened my fear and anxiety.

Once the dye was administered, X-rays were taken which highlighted the kidneys and ureters as well as the bladder.

During the day and into the early evening hours, I was given a lot of pain medication. It made me dizzy and disoriented, but those feelings were better than managing a stone without any pain medication.

At long last, I was discharged from the emergency room. While I had passed the stone during my time in the emergency room (subsequent X-rays showed the stone was gone), I did not "catch" it.

Instead, I was given the next worst kind of news: there was a second, much larger stone in my kidney (the left one).

In my hand, I clutched both a prescription for pain medication and an appointment slip for a follow-up visit with a new urologist. I was taking my first step on a long journey to understanding what had happened to me and what, if anything, I could do to prevent this day from ever happening again.

What I didn't know was that I would be hospitalized twice again, pass three more large kidney stones, undergo lithotripsy (ESWL) three times, and greet the future; a future I could survive with proper nutrition, adequate fluids, and prescription medications, thanks to some of the sophisticated medical advances now available in the management of kidney stones.