Health Care and You: When Vigilance Is a Virtue
A True Story
Moana had always thought that doctors and nurses and hospitals existed to help sick people. After all, hadn't a really nice doctor in the local hospital saved her from a scary sickness when she was only eight years old? From that time on, she had confidence that health care workers were to be trusted and admired. That all changed many years later.
Her primary care physician was indeed a gem. Moana never hesitated to bring her medical concerns, no matter how embarrassing they might be, to her attention. The doctor, in turn, always took Moana seriously and spent as much time as needed discussing and investigating her concerns.
So, a few years ago, Moana voiced a concern that had been haunting her for months.
“I think I have colon cancer,” she said.
The doctor responded with reassurance, saying, “There is no way you have colon cancer. You just had a colonoscopy four years ago, and no polyps were found.”
Not only that, she'd had a colonoscopy four years before that one, and another- her first- five years previously. Everyone knows it takes a polyp about ten years to grow into cancer, right? During those three colonoscopies, she'd never had a polyp. So why was she so certain that she had colon cancer?
It's your body....
Remember the old saying, “nobody knows your body better than you” or the slight variation “you know your own body?” Since she was a child, Moana had suffered from IBS (irritable bowel syndrome) with all its unpleasant physical “accoutrements.” Several years ago, however, she had been having some strange changes in bowel habits that had never presented themselves before. So she decided to schedule a fourth colonoscopy, which, according to protocol, should not have been necessary, particularly since Moana had never had a polyp or a “frist degree relative” (i.e., a parents or a sibling) who’d had the disease.
Following the procedure, the gastroenterologist who had perfromed the colonoscopy pulled up a chair next to Moana'a bed (beds were literally lined up in the hallway of the state-of-the-art center devoted to day-surgeries) and, without preamble, said, “You will need surgery.”
“Do I have cancer?” she asked.
“You will need surgery,” the doctor repeated.
“Why couldn’t you remove the polyp like they always do when my husband has one?” the patient inquired.
The doctor's impatient sigh was almost palpable. “Becuase I don’t have any instruments that are large enough. We’ll discuss all that when you make an appointment at the office.” He got up and walked away, right across the hall to the bed in which Moana's husband lay. (The couple who has colonoscopies together....etc., etc.) “And you,” he announced accusingly, “had a polyp the size of my thumb.”
Moana and her husband decided on the spot to find another surgeon. This one evidently had failed Bedside Manner 101. At any rate, they didn’t plan on having his manner(s), or lack thereof, anywhere near their bedsides.
"Cancer" is not a dirty word.... is it?
A few days later, when Moana and her husband picked up her medical records from their former gastroenterology practice, they were shocked to read that, for various reasons, the most outstanding being Moana's “tortuous colon,” the surgeon who had done her three previous colonoscopies had chosen to terminate the procedures before he had gone all the way up the colon with the scope. ( Later, they learned that doctor was now living hundreds of miles away. Hmmmmm.) The fact that he’d found no polyps probably was true. He hadn’t gone up far enough to find the one that turned into a cancerous mass larger than four centimeters.
Another flashbulb seemed to go off in Moana's head. Perhaps she'd found the explanation for all the reminders to schedule a colonoscopy that she'd received via postcard from the gastroenterology practice. Despite the fact that the colonoscopy protocol suggested by the American Cancer Society- a colonoscopy every ten years starting at age fifty unless a first-degree relative had colon cancer, or a polyp had been found- the postcards had started arriving slighty more than two years after each colonoscopy. She had even received a form letter or two stating that failure to schedule another colonoscopy in the near future would show a disregard for one’s health. Guess the gastroenterology practice figured this would cover them just in case one of their doctors neglected to tell a patient that he had failed to do a complete colonoscopy.
Moana found another surgeon. Her colectomy was scheduled almost exactly one month after the mass had been discovered. Since this surgeon had not performed the colonoscopy during which the growth had been found, Moana was required to undergo yet aother colonoscpy the day before her surgery. This meant no food for several days, since she had to do the unpleasant colonoscopy prep the day before the colonoscopy and remain “cleaned out” for surgery the day after that. This marked the beginning of an experience she would rather forget, which in fact still appears to her in dreamlike segments tinged with the bitter aftertase of a nightmare.
The surgery allegedly went well. The surgeon performed a colectomy, which entailed removing the twelve inches of sigmoid colon that contained the mass. The surgery took place on a Friday. Mona could remember talking with the anesthesiologist pre-surgery. The next thing she remembered was the surgeon coming into her room on Sunday morning and announcing, “I’ll probaby send you home tomorrow.”
Moana voiced her concern that she hadn’t eaten any solid food since the day before her colonoscopy five days prior. (A friend had had a colectomy a month before her surgery was performed; he was unable to keep anything down for almost a week and remained hospitalized until his colon was in “working order.”) The doctor promised he’d order a grilled cheese sandwich for Moana. He was good to his word. She was released the next day.
So who's the boss?
I wish that were the end of the saga. Alas, the story continues.
Almost from the time Moana arrived home, she had felt that something was not quite right. She attributed this vague but nagging feeling, of course, to the fact that she'd just had surgery to remove a cancerous growth. By the end of the week, when she could barely manage to drag herself to the dinner table, had essentially no appetite, and could sit in a chair for little more than a few minutes, the “naggng feeling” was shared by Moana's husband. He called the surgeon's office and left a message. When his call had not been returned by the next evening, he called and left another message. Finally, two nights after the first call to the surgeon, in desperation they called Moana's trusted family doctor. After listenng to a litany of symptoms, she indicated that a trip to the hospital emergency room definitely was warranted.
One of the possible diagnoses muttered aloud by one of the ER doctors was a hernia. A hernia! Moana reminded him that she'd had a colectomy ten days before. Finally, the diagnosis was infection in one of Moana's laparoscopy incisions. A serious infection. Again, she was hooked up to an IV. At some point she was wheeled down to Radiology, where a draiin was inserted, causing her to be in almost constant agony for the next ten days. Her husband was shown how to clean the area and check the drain daily. She was released from the hospital after a two-night stay and told that she should return to Radiology ten days hence, when the radiologist would decide if the infection had cleared. (Fast forward: the torturous drain and a course of some serious antibiotics with a litany of disturbing side effects banished the infection.)
Unfortunately, the saga continues....
That’s not the end of the story.
Perhaps the first clue to the her next Mysterious Malady should have been when a nurse weighed Moana on the state-of-the-art scale esconsced within her hospital bed and announced, “one hundred thirty five pounds.” She may have been grazing somewehre in the Twilight Zone, but Moana was lucid eniough to reply,”No way. I weighed one twenty= five before the surgery, and I’ve barely eaten in a week and a half.”
The nurse solicitously dismissed the comment.
Moana could barely drag herself out to the hallway to await the arrival of the wheelchair that would take her to her car. Another clue.
She attributed the fact that she could barely climb out of the hospital bed that had been placed in the den to the incredibly uncomfortable drain that had been inserted and to the infection itself.
When her sister came to visit a day or so after Moana had returned home, she was shocked. She took one look at Moana's swollen legs and made a call to the family doctor, who proceeded to send Moana for a doppler test. (The technician said that she had been shocked as she looked out her window into the parking lot and saw Moana's agonizing journey, with the assistance of her husband, into the building. She looked like a ninety-year-old woman on a bad day.)
The doppler showed no evidence of a blood clot. So what was causing the swollen legs and agonizing gait? After a visit to the cardiologist, the mystery was solved. The doctor prescribed lasix. Moana began taking the water pills immediately. By the next day, she was twenty-five pounds lighter. That’s right. She had been released from the hospital with twenty-five pounds of “water weight.”
(About a week after that, after falling in her home, Moana's mother was taken to the ER by her caregiver. She was examined, found to be bruised but otherwise ok, and sent home. After observing her obviously painful attempts at movement, Moana's sister took their mom back to the hospital days later. This time, she was correctly diagnosed.... with a broken back. By the time surgery was performed, she had been engulfed by dementia and congestive heart failure in addition to the trauma of surgery She died a week later.)
You've got to be kidding
Less than a year after her colectomy (ten months, to be exact), Moana visited the doctor who had performed the surgery. (She had been having a mysterious kind of discharge and wanted to make sure it wasn’t a sign of cancer. Cancer survivors often become hyper-vigilant about their health.) The doctor examined her, said, “Oh, you have hemorrhoids; I’ll band one of them,” and without missing a beat, he proceeded to do just that. The next day Moana awoke with a strange feeling which quickly tunred into chills and fever. By that evening, she was in the car with her husband, ready to go to the nearest ER. She called the surgeon from the car and informed him where they were heading. He said, “Why would you want to go to the hospital? They’ll just do some CT scans.” So the couple got out of the car and reurned to the house.
Two days later, when she finally did what she should have done in the first place and went to the ER, Moana found herself in kidney failure that had been caused by a serious infection. When the surgeon walked into her hospital room the next morning, he greeted her with, “Don’t think anything I did caused this.”
Moana was diagnosed with infectious colitis....(caused by???).
She has since found a new surgeon (recommended by her trusted primary care physician), with whom she is extremely pleased..
Get to the point already.
Moana did not need one more experience to convince her of the fallacies inherent in the premise that All Health Care Providers Have Our Best Interests At Heart, which is predicated on the belief that All Health Care Providers Are Acutely Aware of Our Best Interests. She finally understood that your best advocate is someone who inherently has your best interests at heart: either you or a loved one. She became driven to research symptoms, diseases, drugs, proposed treatments, etc. of any and all things that affect her or her loved ones. While engaged in her research, she reminds herself to search responsibly; websites like the Mayo Clinic and the American Cancer Society have far more credibility than sites such as Drugs That Can Kill You and others of that ilk. (Some doctors seem to be threatened by patients who ‘do their homework.’ If your doctor tells you not to do so much research, you might want to look for a new doctor.) She also started making lists of any questions she might have for her doctors and does not settle for anything less than a reasonable answer to address her concerns. She has copies of all blood test results, CT scans, etc. sent to her so that when a doctor tells her that her hemoglobin is “low,” she'll know just how low and can research what, exactly, that means.
Ultimately, she (don't assume that everything written in the third person is fiction) joined a forum called HubPages; her first contribution was entitled "How To Navigate The Medical Merry-Go-Round: Becoming Your Own Health Advocate".
(At that point, I/Moana was not ready to share all the circumstances that had led to my strong feelings about advocacy.)
Sound paranoid? Perhaps, but there’s a bit more to the story.
A crystal ball is not the answer.
Not long ago, my sister was hospitalized for an infection. When my husband and I arrived at her hospital room to take her home, the nurse said, “I’ll call your Bactrim prescription down to our pharmacy so you can pick it up before you leave.”
It was like the magic search word had engaged the Google part of my brain. “Bactrim?” I said to my sister. “I thought you were allergic to sulfa drugs.”
“I am,” she replied.
“Bactrim is a sulfa drug,” I stated.
“It is?” the nurse queried as she scrambled to enter the word into her computer’s search engine. “You’re right. It is,” she agreed as the facts about Bactrim magically appeared on her computer screen.
So..... my sister had been about to be sent home with a supply of a drug to which she was highly allergic, and this had occurred at the hospital where she had been employed, the one place that certainly had- or should have had- access to all her medical records. That is, of course, if the doctor had bothered to read them.
Still not convinced?
A few months ago, my husband had some routine blood work done prior to the Yearly Visit to his primary care physician (alas, not the same individual as my primary care doctor). My husband had requested that a copy of the results be sent to him. When it arrived, I took one look at it and said, “There’s something wrong. It’s very unusual for both your red and white counts to be low, plus your hemoglobin and platelet counts are also low.”
His reply: “Well, my doctor must have received the same results, and he hasn’t called.”
A few days later, I insisted that he call the doctor’s office for a referal to a hematologist.His doctor responded with a script for more blood work. That, too, came back “suspicious.”
Shortly thereafter, we went to his yearly visit with the PCD, who said his blood work was “a little low, but your blood pressure and cholesterol are great.”
(Of course they were. He was on medication for an artery that was 100% blocked.)
Mt husand and I both made reference to the low blood counts. The doctor replied, “Well, I can refer you to a hematologist if you want me to.”
The outcome: the hematologist sent him for more blood work and an ultrasound. The ultrasound indicated that there was a mass in his kidney, and then a CT scan showed a small (9mm) mass in his right kidney and a larger (4.5 cm) mass in his left kidney. The small lesion was removed two weeks ago to ensure that the right kidney is in excellent working order before the left one (the entire kidney) is removed.
The moral: Be vigilant. Do your homework. Advocate. Insist. You might come off as a paranoid know-it-all, or perhaps as a Moana. Then again, that might not be as important in the long run as the health of your loved ones and yourself.