Alone in a hotel room far from home, the flank pain was excruciating. I was diaphoretic and nauseous. I knew these were the telltale signs of a kidney stone.
Without knowing any doctor in the area, my husband and I trooped off to the closest hospital emergency department. An IV with pain medicine brought instant, gratifying relief. Blood and urine tests and a CT scan were performed.
After lying on the gurney for a couple of hours waiting for the test results, the stone moved and the pain vanished in a flash. But the episode was not over.
The CT scan revealed cyst-like lesions on my kidney, ovaries, and liver. I knew about the ovarian cysts, and my gynecologist was keeping an eye on them. The others were news to me. The emergency room physician recommended an MRI and follow-up with the internal medicine physician on call.
My instincts were to go back to the hotel and follow-up with my primary care physician at home. But feeling vulnerable and disempowered while lying horizontal on the gurney and wearing a paper gown, I agreed to the MRI. The worry and waiting to hear from the internist were unnerving. Fortunately, he said, “You just have a lot of cysts, nothing to worry about.”
After a four year hiatus, the familiar flank pain returned. The timing was not auspicious because I was caring for my very ill elderly father and could not be sick and take care of him at the same time.
The symptoms were more subtle at first. I wanted to wait it out and avoid the expense and inconvenience of a doctor visit and work up. The initial acute pain was not nearly as bad as the first kidney stone.
A lingering symptom was a constant need to urinate, and when the urine became bloody and the pain increased, I went to the hospital emergency room because it was a weekend and my primary care physician was not available. After giving a urine sample, the stone moved and my pain went away by the time I saw the doctor.
A CT scan was recommended. I questioned whether it was needed and was told that it would provide information on the size and location of the stone. I relented. Since then, I have learned that an ultrasound or single upright abdominal x-ray may have provided the same information. The stone was small, less than 5 millimeters, and it passed several weeks later.
Earlier this year, a third kidney stone made its presence known. As a patient with a history of them, the onset of a new one is familiar. The pain began on a Friday night. I bucked up and tried to be stoic, hopeful that it would pass, as the other ones had.
Miserable, I gave in and went to the emergency room on a Sunday afternoon. I explained my history and symptoms to the physician. I told him this stone seemed different. It was constant, staying in my kidney, and much worse at night when I tried to sleep.
I asked for an ultrasound because this stone must have been much bigger since it was much more painful than previous ones. It was not going to leave on its own.
Ninety percent of kidney stones pass on their own and the test was not necessary, I was told. I did not think this was the right decision but kept silent, unlike my usual assertive self.
Illness and pain diminish a person’s ability to speak and be heard. I was also told that if the stone did not pass and caused damage to the kidney, at least I have another kidney.
A urinalysis found blood and leukocytes, and the specimen was sent for a culture. Bactrim was prescribed and discontinued two days later when the test results were negative for infection.
Ready to go home from the emergency room, I was advised to follow up with my primary care doctor and a referral to a urologist, if needed. I was given four hydrocodone pills that I did not use, relying instead on ibuprofen, and an antibiotic that I stopped taking. What I really needed, I did not get.
The next five days were spent pursuing a proper diagnosis and treatment, all the while enduring some of the worst pain in my life
I obtained an appointment to see my primary care doctor on Tuesday. He ordered blood work and an x-ray and the results took what seemed like an eternity to come. I went from my primary care doctor’s office to the local hospital imaging department where the technician showed me the x-ray that revealed a 1.5 centimeter stone in the left kidney. It would not have passed on its own.
This significant x-ray result was not reported to my primary care doctor’s office. It took two days before I received the official results, and that happened only because I badgered the primary care physician to call the radiologists office to obtain the reading,
Time was of the essence. If a stone is blocking urine flow, as it was in my case, and is left untreated, the kidney or ureter can be damaged. Before I could see a urologist, I had to have the results of the x-ray and blood work.
I called three urologists’ offices before one agreed to see me within a few hours. He could see how sick I was by looking at me.
An elevated creatinine level suggested the left kidney was already struggling. A procedure to insert a stent to allow the urine to flow was scheduled right away. After the procedure, the pain was gone. Two weeks later a cystoscopy with laser lithotripsy was done to break up the large stone, and the pieces were removed with a tiny instrument with a retrieving basket on the end of it.
During a follow up ultrasound exam, hydronephrosis of the affected kidney was found, caused by temporary scarring or inflammation from the huge stone. A second follow-up ultrasound revealed that this problem has resolved.
As a member of the Maine Choosing Wisely collaborative, I believe that overuse is a huge problem that can cause physical and financial harm to patients. The best way to avoid it is when doctors and patients have a conversation about treatment options. The doctor brings knowledge and expertise, and the patient brings knowledge about his or her medical history.
With the first two kidney stones, I believe that less would have been more, especially the CT scans. When intensive intervention was warranted to resolve an urgent medical problem, more would have been better.
What would have helped in the third episode is if the doctor had asked a simple question, “You’ve had kidney stones before. How does this one compare to others?” The outcome could have been much different. An ultrasound or x-ray would have triggered a consultation with a urologist much sooner, leading to quicker resolution.
Fine tuning every encounter, based on the evidence and conversation with the patient, is important when developing a good treatment plan. By working together, patients are more likely to receive the care they need, not the treatment they don’t.