My dentist found 8 cavities: Fluoridation

In 1944, Dr. David Ast began a ten-year landmark case study in two New York towns about the effects of fluoridating a town’s water supply. His conclusion: fluoridation reduced cavities in children by 60 – 70%, without significantly changing the rates of cancer, birth defects, heart disease, or kidney disease. He then became a prominent advocate for fluoridating New York City’s water supply; fluoridation started there in 1965.

As a boy born in New York City in 1957, I still remember the time my dentist found 8 cavities during a single exam. Luckly, all but one were in baby teeth. Fluoridated water and toothpaste came just in time--no more cavities.

A great big pearly white smile for Dr. Ast’s memory! He died two weeks ago at age 104.

Advice: When you learn of solid research results which are supported by other studies, be a public health advocate. Share the new knowledge—it could put a great smile on your son’s face.

Source: Obituary by Jeremy Pearce in the NY Times, Feb. 23.

He probably saved my life: A patient advocate

Retired Probate Court Judge Sumner Kaplan was hospitalized for life-threatening colon cancer. A long-time retiree friend—a former physician named Jonathan Fine—visited and even stayed with him in the hospital, sleeping on the floor. Dr. Fine (yes, that’s his real name) clarified the explanations of Sumner’s doctors, fetched ice water, helped Sumner walk the halls, eased his anxieties about dying, and pressed for a CT scan that uncovered an internal bleed (hemorrhage) that could have killed Sumner.

“He probably saved my life…He gave me not only a feeling of comfort, but of hope,” judged Kaplan.

Advice: Get an advocate for your hospital stay.

Read another story of an advocate friend, or read the article by Alice Dembner in today’s Boston Globe.

"Mommy, your eyes are yellow!": An adverse drug reaction

Beth Hollister lives a fast-paced life. She's a mother, homemaker and a world-traveling business woman: "I don't get sick. I'm somebody that works 40, 50, 60 hours a week."

She's just now getting enough strength to get back on the road after suffering a severe drug reaction two years ago. She said, "My son actually came to me one day. He said, 'Mommy, your eyes are yellow.'" The medicine she had been taking for an ear infection led to a much bigger problem. Her liver was failing; it couldn't process ("metabolize") the drug. Two years later, after discontinuing the medicine, Beth still feels the drug's effects. Now: "I feel like I'm just getting back on track, but that I still have some fatigue." Tired -- but getting better every day.

As the liver doctor who diagnosed Beth's problem commented, "Different people need different amounts of drugs. Every drug, even the best drugs, can be bad for some people."

Advice: Remember that even common drugs can cause problems in the wrong patient. And listen to your kids when they speak as your health advocate.

Read another adverse drug story, or read the full account of this one.

Don't rock the boat, the experts told her father: Misdiagnosis

Pat's journey has taken decades. And she isn't cured. She lives with her illness the way diabetics live with theirs. But now she has graduated cum laude from college, and has a job. She hopes to work in human services and counsel people. "This is the next phase of my life, helping other people not be trapped by this illness."

Now 54, she had lived for long years in the best hospitals, diagnosed and misdiagnosed: depression. Paranoia. Bipolarity. Schizophrenia. But her father didn’t listen to the experts who told him not to rock the boat, to just to let her be stable, and live the life she knew, sheltered and safe.

The secrets of her eventual success in getting to health? Her father’s persistence. A creative hospital program that helped her re-invent her life. A new drug, Clozaril. And as her proud father says, the fact that "Pat never once said, 'I can't do something.'" By themselves, none of these were enough, but together, they have given her back her life.

Read her full story in Beverly Beckham‘s article in the Boston Globe.

How He Saved his Manhood: Unnecessary surgery

When a scan showed a lump in his scrotum, Nigel Summerley was told it was probably cancer and he'd have to lose a testicle. He describes how he took charge of his treatment - and kept his tackle intact.

Shock Number One came when I went for the ultrasound scan. Four weeks before that, I'd gone to my GP because I had a vague discomfort in the area of my right testicle. She'd examined it and sent me off to my local hospital to arrange a scan. The scan operator reported a mass 7 millimeters across [about a third of an inch].

Things moved quickly after that. In less than 20 days I would be in the operating room.

Shock Number Two came six days after that scan, when I went for an appointment at the hospital's urology department.

The Registrar told me he and his senior consultant colleagues had studied my scan and they had unanimously agreed that the best course of action was that I should have my right testicle removed.

"When do you want my decision?" I asked, stunned.

"Er, now," he said.

"But I can't make a decision now," I said.

"Then it's best if we proceed as though you've decided to have it done. You can always change your mind."

"When would you do it?" I asked.

"Next week."

The scan had shown a "lesion." They couldn't be sure it was cancer, but couldn't be sure it wasn't. So they didn't want to take any chances. Their plan was to remove my testicle as soon as possible, slice it up and biopsy it to determine what the lesion was.

"Isn't it possible to do a biopsy on the operating table?" I asked. My girlfriend had found references to such a procedure on the Internet.

But the Registrar's answer was: "No, because it takes three or four days to get the results."

"But what if I have the testicle removed and then find it wasn't cancer? "

"Most people are just relieved to know they haven't got cancer."

"If I had it removed, then found out it wasn't cancer," I said, " I think I'd be angry."

This didn't register with the Registrar.

"Are you really attached to it?" he asked (yes, that's what he actually said).

"Well, yes."

"It doesn't make that much difference," he said, referring to an orchidectomy (removal of a testicle). "Partners don't really like to look at them anyway."

I was getting in a terrible state, even though I knew testicular cancer was one of the "best" cancers to have - it is almost always possible to treat effectively, if it's caught early. Still, the fog of fear was coming down.

From the start, I got much more information from outsiders than I did from the hospital. Don't get me wrong - I'm not knocking the medical staff. They all did their best for me, within the constraints of the system, and they were utterly professional. But it was up to me to see what they could offer. I wanted to be the decision-maker, and ultimately I was.

An old friend, naturopath Dr. Don Canavan, in Oregon, directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion.

The Registrar I spoke to about this was dismissive when I quoted him the papers. But he promised to look into it and we'd talk again - which we did. In that next chat, he said maybe I'd like to speak to the "organ grinder" -- a consulting physician -- maybe the man who was going to cut off one of my testicles.

It was now 11 days since the scan and a week before the date we had provisionally agreed for an operation.

When the consulting physician called me, we went through the same conversation about MRI - he wasn't impressed but asked for the references. This was the most bizarre episode of my little adventure - kneeling on a dirty pavement with my mobile and laptop, reading out scientific references to a medical expert.

Now, for the first time, the genuine possibility of a biopsy while I was under general anaesthetic entered the conversation. The consultant said that it was possible to do it; they could get a yes-or-no result on whether it was cancer, but I had to be aware there was a "grey area" of 10 to 15 per cent in such results that could only be resolved by further tests. Another consultant later told me that the grey area could be 30 per cent. If so, I might need two operations in succession -- if, after a few days, they found it was cancer.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to the operation.

I had the operation. The first thing I did when I awoke from the anaesthetic was to count my testicles. I still had two.

The "lesion" had been removed and identified as a benign capillary haemangioma (BCH) - only five testicular BCHs had ever been reported worldwide, so it was rare - and harmless, like a blood blister. The consulting physician was sure it wasn't cancer, and I got the all-clear when the final biopsy results arrived the following week.

But the fact remains that if I had taken the doctors' initial advice without question (as many of us do), I would now have only one testicle - plus the knowledge that the one I had lost had been healthy.

I thought I knew better - and, thankfully, this time I did.

Nigel’s Advice:

* If you have symptoms, don't delay in getting them checked out.

* If it's bad news, don't panic. Don't waste energy wishing this hadn't happened - deal with what's happening now.

* Don't suffer alone. Gather support from those close to you. Talk to your partner, family, friends and colleagues. The reactions of my children, mother, girlfriend and friends inspired me.

* Work the Internet, read and find out as much as you can about your condition.

* Talk to people who've been through similar experiences.

* Be prepared to be you own best advocate, though this may be one of the times when you are least prepared to do so. If you're not happy about the treatment your medical team has suggested for you, then say so.

* Try not to be intimidated by doctors and don't be afraid to ask questions. If necessary, make notes when you go for an appointment, or take someone with you.

* If you're unhappy about anything about your treatment, let the medical staff know about it.

* Don't be afraid to cry.

Read the fuller story.

Too Much of a Good Thing: Lesson Two

Mrs. A. is a heroine of the story, for providing the hospital resident the key information about her husband's vitamin and mineral supplements. She could have acted even sooner--when the mineral supplement was first prescribed. At that point, she could have asked the surgeon how and when the mineral supplement would be effective. If the answer was, "It should help the wound heal within two weeks," Mrs. A. could then ask, when the wound hadn't healed two weeks later, whether the mineral supplement should be continued. The lesson: When receiving a prescription, ask when and how the prescribed drug will likely be effective. If it has not been effective, follow up with the prescribing doctor.

Readers: Has something similar happened to someone you know?

Medical Error of the Week: Too Much of a Good Thing

Mr. A., a bearded, pleasant-looking married man of 47 with three children, loved to eat. His weight had become alarming, and he had gotten diabetes. Four years ago, he had had gastric bypass surgery to reduce his weight; he lost more than 100 pounds--and his diabetes. Two years ago, he developed a hernia (a protrusion through the abdominal wall), which was repaired surgically. To speed the healing of the surgical site, his surgeon prescribed multi-vitamins, with a zinc supplement. However, the four-inch wound didn’t heal, even after intravenous antibiotics in the hospital. Indeed, he became anemic—tired, and lacking red blood cells, achy, and neutropenic (having lost most of his bacteria-killing white blood cells), along with a fever. A young hospital resident [physician] determined that both his anemia and neutropenic fever had been caused by too much zinc. The doctor told him to stop taking the zinc supplement, and he recovered fully within two months.

What was the error?
A preventable adverse drug event/adverse drug reaction to zinc. The dosage may have been too high (wrong dose). The patient might have been instructed to take the zinc for too long (wrong time).

Why did the error occur?
The surgeon had prescribed the high doses of vitamins and zinc because of evidence that they can speed healing after surgery, especially early on. However, the surgeon, the hospital doctors who treated him later, and his primary care physician did not link the complications of anemia and neutropenic fever to the zinc supplement.

Lessons for Caregivers:
Mr. A.'s wife had shown the hospital resident the list of Mr. A.'s home medications, enabling the resident to learn of and look into the role of zinc. Mrs. A had included vitamins and minerals in the list--not only medicines. She both wrote the list and brought it in to the attention of the doctor at the right time. Bravo! Please do the same for your family members.


Later this week we'll discuss more about Mr. A.; stay tuned.

This summary is drawn from Dr. Lisa Sanders’ article, “The Healing Problem,” in The New York Times Magazine, Nov. 12, 2006.

Our Purpose

Our family members need us to help them get the best possible medical care. When they're ill, we and they need to know how to advocate most effectively, and work best, with doctors, nurses, and other health professionals. In focusing on the needs of family caregivers and their patients, this blog provides advice to keep our parents, children and other loved ones with acute or chronic illnesses healthy and safe from medical errors.

We provide a place for readers to tell and hear stories about the medical care they have seen and experienced, to give advice and get advice.

We help patients and advocates to be knowledgeable, pro-active, and empowered partners with their doctors and nurses.