Living Like It’s Shark Week!

Today is the start of this year’s Shark Week on the Discovery Channel.

shark (adapted image from Wikimedia Commons)

Dialog from NBC’s 30 Rock, Season 1, Episode 4 “Jack the Writer” (2006)*:

Tracy Jordan: But I want you to know something… You and me, it’s not gonna be a one-way street. Cos I don’t believe in one-way streets. Not between people, and not while I’m driving.

Kenneth: Oh, okay.

Tracy Jordan: So here’s some advice I wish I would have got when I was your age… Live every week, like it’s shark week.

(No further explanation is given. In the next scene the comedy writers take a one-minute dance break and then Jack provides an intro to GE’s six sigma program.)

—–

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What the Dermatologist Did Right

Kudos to my newest doctor, a dermatologist whom I met yesterday for evaluation of a small, benign-appearing mole I recently noted on my right leg. What she did right:

1. She saw me promptly, at the time of my scheduled appointment.

(Thank you, you seem to value my time, as I do yours.)

2. In her initial clipboard-bound paperwork, along with the usual forms about my history (always with insufficient space for my case and, unfortunately, still non-electronic) she asked not only for emergency contact information, a standard, but for the name and relationship of someone besides me – such as a family member or close friend – with whom she might discuss my condition, if I permitted.

(Thank you for asking this and really, I’d prefer that you not speak with my parents about my results. I’ll be turning 50 next month.)

3. In the same short set of greeting paperwork, she didn’t just ask for my phone numbers and other contact information. She took this to another level and asked if it’s OK to leave a message on my home’s answering machine.

(Thank you again, for asking. I have teenage sons and don’t particularly want them hearing about my appointments or biopsy results before I get the message.)

4. Her assistant walked me into a room and told me to stay dressed. “The doctor likes to talk to people with their clothes on, before they put on the gown,” she explained.

(This was really terrific, and I hadn’t even yet met the doctor!)

I wasn’t disappointed: when Dr. G. entered the room, she was professional, considerate and thorough. I got the feeling she works conscientiously and carefully. And that she cares.

——

I can’t help but reflect on what a difference these sorts of details can make in a patient’s experience. How many times had I been in an orthopedist’s office for the first time, or at a different dermatologist’s, pleading with a nurse or technician that I might keep my clothes on until I’ve met the doctor and we’ve spoken.

It’s inefficient, I suppose, for doctors to meet patients in a small exam room, to exit and then re-enter after they’ve changed into a gown. But it’s humiliating, I feel, for an adult woman or for any person to meet the physician, especially for the first time, when they’re not wearing clothes.

A dermatologist, or any doctor for that matter, can’t necessarily take away the condition you have, which may or may not be serious. They may not have an easy remedy. But if they treat you with courtesy and respect, that makes it easier to cope with any situation.

Fortunately the lesions Dr. G. removed are likely nothing more than benign moles with Greek-derived names. One was a bit vascular. The lesion bled once she snipped it off, and so I can’t swim for a few days until the wound heals. But otherwise I’m doing fine.

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Avoiding Blood Clots During Long-Distance Travel

A few years ago my family took a trip to China. Even before we arrived, I learned something about an unfamiliar health care culture. What I observed en route was that many of the older passengers on that long flight to Beijing were getting up from their seats and stretching. Not just once, but regularly and systematically – they were doing slow motion, isometric calisthenics on the airplane.

I took notice of their behavior first because it seemed a simple and inexpensive, albeit strange example of preventive medicine. Second, as a hematologist who cared for patients with blood clots upon traveling, I pondered the risks and benefits of their on-board exercises. Third, as a patient who’s had a blood clot, or deep venous thrombosis (DVT), I thought maybe I should follow their example.

Thrombophlebitis – the old term for DVT – happens when a vein (as opposed to an artery) gets clogged with platelets and fibrous proteins. These tend to develop in people who are immobilized – after a hip or spine surgery, for example, or during long, cramped trips in airplanes with little legroom. For this reason, long-distance travel (in any sort of vehicle – it could be a car or bus or a train) is a major risk factor.

Dehydration and some medications can exacerbate the risk of developing blood clots during travel, as can having some kinds of cancer. (Pancreatic cancer, prostate, ovarian cancer and other tumors in the pelvis are particularly troublesome in this regard.) Some people inherit an increased tendency to develop clots; in general these can be evaluated by blood tests.

Most often DVTs arise in the legs but sometimes these also occur in the arms and other body parts. The condition can cause discomfort, pain, redness and swelling of an affected limb. These clots are most dangerous, and potentially lethal, if they spread to the lung – what’s called a pulmonary embolism. So there’s good reason to avoid these as best you can.

Here’s a list of some precautions to avoid blood clots when traveling:

1. Try to get an aisle seat. This strategy allows you to periodically stretch your legs into the aisle, and to get up without disturbing others.

2. While seated, move your feet and legs around as much as circumstances permit, and at least every hour or so. If you absolutely must remain seated, flex your feet 10 times, and stretch your legs as best you can, bending and extending the knees, one at a time, in any available direction, 10 times each. Another exercise is to raise each foot and swivel it, pivoting the toes from side to side while keeping the ankle relatively still.

3. Get up periodically and walk, every hour or two if permitted. (This means getting less sleep if you’re lucky enough to fall asleep, but I think the trade-off is worth it: being tired upon arrival is unpleasant; getting a blood clot is worse than that.)

If you’re on an airplane – once you’re up and out of your seat, seek out a place near the kitchen, restroom or elsewhere where you might stand. Then, hold onto the wall or the back of a chair, lift and stretch each of your legs repeatedly and then march in place: one knee up, then the next for two minutes or so, as conditions (and flight attendants) allow.

4. Stay well-hydrated by drinking ample water. Alcohol is a diuretic and should be avoided or minimized; caffeine too. Of course, for some travelers with weak bladders drinking lots of fluids can create a need for frequent bathroom trips. But this isn’t such a bad thing if you’re at risk for DVT, because this gets you up and out of your seat.

5. Dress sensibly – avoid tight clothing. (Some doctors recommend TED (thrombo-embolic Deterrent) or other compression stockings for patients with DVTs who travel, but I find these graduated compression nylons so uncomfortable that they reduce mobility, besides the capacity to bend and flex my ankles and knees.)

For women: avoid “knee-high” stockings with compression bands pressing just below the knees. These are a set-up for reduced blood flow from the lower legs to the larger, central veins.

6. Talk to your doctor if you’re concerned about DVT and are planning a trip. Ask about what precautions you might take in the context of your specific medical circumstances. Some people use heparin, a blood-thinner, or other medications while traveling to reduce their risk. Keep in mind that for most people, the risk of forming a significant blood clot is low.

—–

The trip to China was fabulous, well worth the distance.

More on travel next week –

ES

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On People Who Receive Care From Physicians

This week’s medical blog Grand Rounds will focus on posts having to do with “customer service” in health care. A problematic concept, it seems to me.

As a physician I never considered my patients as buyers or consumers. People came to me as their doctor, or I visited them in the hospital, and I thought my job was to identify if something was wrong and, if so, to identify the exact nature of the problem and then take care of the person as best I could. I didn’t contemplate the situation with a business mind-set.

As a patient I don’t think in shopping terms when I visit my doctors or my physical therapist, although I do sometimes pay significant bills. Even for lab services, such as at Quest Diagnostics, I don’t feel as if I’m making a purchase. Sure, I’m annoyed when there’s a long wait or my results are inexplicably delayed. And I sometimes prefer one technician to another. I might mind the costs, and if there’s an error in my bill I’ll challenge that. Still, I don’t perceive myself as a health care customer.

In medical journals a patient typically is called a person, an individual, a subject in a clinical trial or (unfortunately) a case. But in some blogs and other sources I’ve been reading lately, most often having to do with health care delivery or IT, consumers pop up constantly. A good example occurs in a recent article in the journal Health Affairs, “Evidence That Consumers Are Skeptical About Evidence-Based Health Care.” This study generated a small brouhaha (in my opinion undeserved) about the public’s alleged blind faith in their personal physicians’ advice.

In reviewing that story, what most surprised me most about the paper was not so much the study’s findings (limited) or sponsorship (by the National Business Group on Health), but its language. The term “consumer” or “consumers” appears in the article’s title, no fewer than 5 times in the 125-word abstract and a noteworthy 39 times in the main paper excluding captions, tables, and references.

My point, which is really a question, is whether people who seek out or need health care should be referred to as consumers or customers. My gut feeling is that neither term is appropriate. But then again, I don’t believe that medicine can be or should be run as a business. Here’s why:

If physicians are in a position that they might be influenced by a profit motive, they’re less likely to make decisions based in evidence and are more likely to make recommendations that include income-generating procedures and treatments.

If people receive medical care from physicians who might generate greater income by recommending particular treatments, procedures or referrals, they may not receive the most appropriate care. What’s more, they are less likely to trust that their physicians are providing sound advice. The upshot is that when expensive medical care is needed – say, for the sake of this discussion, in the case of a young person with a curable leukemia – some individuals may be less trusting of physicians if they think they are motivated by money and may decline helpful and even life-saving treatments. So the profit motive, or even the appearance of a possible profit motive, has the potential to lessen the patient-doctor relationship and undermine good care.

What’s worse, though, and even more off-putting, is that in a financial transaction for medical care – in which a person with or without an illness is referred to as a “consumer” in a business called the health care industry – what’s really happening is that the illness, and maybe even the patient who has an illness, is rendered a commodity.

Ultimately this is the greatest downside of medicine as a business. No. I don’t think patients should be considered as customers or clients by any other name.

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A Routine Visit

Yesterday I visited my internist. I had no particular complaint. My back hurt no more than usual. The numbness in my left foot was neither better nor worse than it was last month. I wasn’t suffering from vertigo or abdominal pain. I went because I had an appointment to see her, nothing more.

Until just a few years ago, I rarely visited a doctor unless I was pregnant or sick. I called when there was a problem, and my doctor would see me in whatever unusual circumstances I was in. She checked on me when I was in the hospital, reviewing my labs and x-rays and whatever else there was to take in. When I had cancer, or needed pre-operative evaluations for surgery, she would check my heart and lungs and write a note as needed. Sometimes I went to her office for a flu shot.

The idea of an adult woman seeing the doctor for regular, what some might call “well,” care might seem strange or even wasteful. Some might consider it a luxury, which I suppose it is.

But I think some of the most informative doctors’ appointments are routine. That’s because there’s value in a doctor’s getting to know a patient when she’s not particularly ill, when she’s not in pain or terrified, when she’s feeling just as usual.

I’ve had the same primary care physician since 1987. She knows my habits, my fears and my quirks. She, as much as anyone, has a sense of how I’m doing – emotionally and physically. In some years, I’ve taken better care of myself than in others, and she’s very much aware of that. She examines me carefully and makes suggestions regarding diet, physical therapy and other everyday, non-urgent matters in my life that affect my health.

The best thing about having a doctor know me so well is a matter of trust. I rely on her not to solve what’s unsolvable, which of course no one can do, but to do the best she can to take care of me. If ever I’m very sick again, in a circumstance when I can’t make decisions for myself, I know she’ll act according to my interests. She’ll be able do so because she knows me, my usual self.

Having a doctor who knows you shouldn’t be a privilege. Really I wish it for everyone. It helps.

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Uncertainty Rules (on Eyjafjallajokull, volatility and a patient’s prognosis)

(on Eyjafjallajokull, volatility and a patient’s prognosis)

Eyjafjallajökull, April 2010 (Wikimedia Commons, attr: David Karnå)

As pretty much anyone traveling in Europe this week can tell you, it’s sometimes hard to know what happens after an unusual, disruptive event. Volcanologists – the people most expert in this sort of matter – can’t say for sure what the spitfire at Eyjafjallajokull will do next.

It comes down to this: the volcano’s eruption could get better or it could get worse. Or it might fluctuate for a while. If the situation persists, there’s no telling if its course will stutter, like seizures of varying intensity in a person with untreated epilepsy, or if it will flare sporadically like disease exacerbations in patients with MS and then, with some luck, peter out.

Some wonder if the ash might spread westward over the ocean, affecting distant cities like New York and Chicago. Unlikely, it seems to me, but this is far afield from my area of expertise.

What I do know is oncology, and so how I’m thinking about Eyjafjallajokull in medical terms – I want to know the prognosis: how bad and extensive will be the damage, how much will it cost, and in a few weeks or (please, volcanologist, don’t say it could be months) from now, how we can know for sure when the situation has cleared.

Aside from a few pulmonologists who rushed in to say there’s not much to worry about the silica-laden aerosolized dust particles, most scientists who’ve been interviewed have been cautious. I admire their candidness about what they don’t know.

For example, yesterday NPR’s All Things Considered offered this assessment:

“The volcanic eruption that has grounded planes and closed airports throughout Europe appears to be slowing down. But before travelers start rejoicing, Icelandic scientists have a warning: The eruption could start up again any time.

The website of the American Geophysical Union offers some explanations provided by Dr. John Eichelberger, Volcano Hazards Program Coordinator at the U.S. Geological Survey who, it happens, was grounded in Europe after attending a scientific conference:

“Although we’re pretty good at saying when an eruption will start, we’re not so good at saying when it’s going to end. You go mainly on the basis of history, what the volcano has done before. In the case of this volcano, the last time it erupted it was active for over a year. The other factor is how the wind is blowing…

Today, the BBC published several scientists’ opinions including these differing views:

Dr John Murray, an Earth scientist from the Open University in Milton Keynes, said that the ash had “significantly diminished” and the ice over the crater itself had melted…”This is the stage we have been waiting for: the steam explosions due to water being trapped within the erupting lava will have virtually ceased, and the activity has changed to lava outpouring,” he said. …Ash may resume at any time, but it is likely to be less pronounced and prolonged than before.”

But Dr Sue Loughlin from the British Geological Survey pointed out that a decrease in the volcano’s activity might not mean the end of the eruption all together. “There’s seismic activity ongoing, which means the eruption is ongoing…

You get the idea, a volcano in Iceland exploded for the second time in two months, putting much of Europe at a stand-still. Business travelers, vacationers, and companies had to stop and make new arrangements and even compromises. Disappointment and frustration ensued, besides some anger toward those whose job it is to decide if it’s safe to fly.

Going back to medicine – I’m thinking of a patient I once cared for with a non-Hodgkin’s lymphoma. When her disease struck, she was a young mother like me who led a complicated life with lots of responsibilities.

The type of lymphoma she had was uncommon; she sought multiple expert opinions regarding her exact diagnosis and treatment. My colleagues and I didn’t all agree about chemotherapy and radiation, and she was uncertain of how to proceed. Ultimately she opted for surgery and six months of chemotherapy. At the end of all that, she wanted to know if the lymphoma would come back.

“We can never be sure,” I told her. There’s really no choice but to watch and wait.

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An Ordinary Day

If there’s one obvious thing I didn’t learn until I was well into my forties it’s this:

Don’t let a day go by without doing something you feel good about.

This message is not unusual, cryptic or even interesting. It’s simple, really so trite you could find it in most any “how having cancer changed my life” book available in bookstores and on-line.

Why say it again? Everyone knows we should relax and enjoy sunny weekend days like this.

Because it’s a reminder to myself, as much as for some readers and maybe a few fledgling doctors out there. One of my biggest regrets, during and after so many medical hurdles, is that I was overly ambitious. I am, probably still, one of those people who’s hard-wired to achieve. At work, when I was a young physician-hematologist-oncologist-cancer researcher-pregnant wife, I worked long, long hours. After dinner in our apartment, I’d stay up late, reading, and get up early enough to read the paper and have some breakfast before morning rounds. Later, as my career matured, I used extra hours for research, presentations, grant proposals and, of course, more reading. I loved my work as much as anyone I’ve ever known, wishing I could put more time into it, not less.

Illness places real limits on people’s capabilities. I refused to accept this. I just kept pushing. No excuses.

Looking back, I see that I should have slowed down earlier in my career and made more time for my family and for myself. I needed physical therapy and an occasional day off. Even while I had breast cancer, undergoing treatments, I worked in the clinic, took on administrative responsibilities at the hospital (in lieu of being on-call), and continued to write and review manuscripts, besides teach. After my back operation, a huge, painful and bloody affair, I returned to work and took call like everyone else. It took me too long to realize that I should pull back.

So I think it’s a lesson, or at least it’s one for me. It has to do with the Passover story of Exodus. Making sure to enjoy life, taking some time of each day and week to focus on what you choose, is the privilege of not being a slave.

An unfortunate reality is that many people work long hours because they must, due to financial necessity or because they have no choice. But for those who aren’t so strapped that they must work 16 hour days, who do it for pleasure as much as for wages or for riches, maybe it’s a reminder to take care. Sometimes it takes discipline to know when to shut out the light, or even call it quits. Less is more, sometimes even better.

It shouldn’t take a catastrophic illness to get this message through. Maybe just a good night’s sleep, or another sunny day tomorrow.

Take it easy.

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On Precious

This is my first film review, if it is that.

I was tempted to write about Ethan Hawke, hematologist among vampires in Daybreakers, but gore’s not my favorite genre. A mainstream choice would have been Harrison Ford solving the enzyme deficiency of Pompe disease in Extraordinary Measures, but I didn’t get sucked in. I chose Precious, instead.

Poster for Precious, the film based on the novel “Push,” by Sapphire

This luminous movie relates to the practice of medicine everyday, big-time. Directed by Lee Daniels and based on the novel Push by Sapphire (Ramona Lofton), the film follows a very obese Harlem teenager who’s pregnant with a second child by her abusive father. She’s humiliated daily by her welfare-dependant mother who forces her to cook greasy food and perform sexual acts all-the-while telling her she’s worthless. She’s 17 years old and can’t read. Things can get worse, and do.

What’s relevant to medical lessons?

For doctors –

The message of Precious, that every human life has value, should be obvious to every person employed in the health care system. But I know too well that’s not true.

When I was a medical student in 1985, working with a team of surgery residents, we cared for an obese young woman from Harlem who came in with a life-threatening case of pancreatitis. Her internal insulin-manufacturing organ was so inflamed that her entire gigantic abdominal cavity was tender and bloody. During what seemed like an endless operation in the middle of the night I stood and held firmly a retractor as best I could. The next morning and thereafter, when we made rounds, the residents called her “the whale.”

I learned a lot about pancreatitis and surgery that month. But I couldn’t understand how she, my patient, tolerated the team’s attitude. She didn’t seem to mind, perhaps because we saved her life and the care we provided was free. In retrospect, I wonder if maybe, like Precious, she was too-accustomed to disrespect.

Of course, this is an extreme example from 25 years ago. And I know from my experience working for years in a hospital, and in my years as a patient, that most doctors treat most patients with appropriate dignity. But those residents I worked with then are senior practicing physicians now, likely some on the faculty of medical schools. The disposition to disparage patients, more often subtly – in keeping them waiting without good reason, in dismissing their long lists of real concerns, in somehow putting ourselves above them and even, still, occasionally expressing frank contempt for some unfortunate souls still permeates the hospital culture.

For patients –

When Precious is abused, her mind runs elsewhere. She imagines herself, huge body and all, cast glamorously among television stars or dancing with popular singers. She pretends that she’s all right even when she’s not, really. Finally she speaks up for herself, telling a social worker about her predicament.

Ultimately that’s what makes the difference – her confidence in the value of her own bruised life. She recognizes that, despite everything, she’s a full-fledged human deserving better and has the guts to ask for help. By insisting, by knowing, that her life matters, she pushes herself out, if only partly, from the bleakest of circumstances.

If you’re disabled, hurt, wounded, damaged – ask for help when you need it. Respect yourself, as Precious did. That sends a signal to doctors that you value your life, and they should treat you accordingly.

Hopefully they’ll be paying attention.

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Henrietta’s Cells Speak

“One of the ways that I gained the trust of the family is that I gave them information.”

(R. Skloot, a journalist, speaking about her interactions with Henrietta Lacks’ family, Columbia University, Feb 2, 2010)

This week I had the opportunity to hear a terrific talk by Rebecca Skloot, author of a new, flying-off-the-shelves book –The Immortal Life of Henrietta Lacks.

Mrs. Henrietta Lacks died of metastatic cervical cancer in the colored ward at Johns Hopkins Hospital in Baltimore, MD in September 1951. She lived no more than 31 years and left behind a husband, five children and an infinite supply of self-replicating cancer cells for research scientists to study in years to come.

HeLa cells with fluorescent nuclear stain (Wikimedia Commons)

Like many doctors, I first encountered HeLa cells in a research laboratory. Investigators use these famous cells to study how cancer cells grow, divide and respond to treatments. I learned about Mrs. Lacks, patient and mother, just the other day.

Skloot chronicles her short life in fascinating detail. She contrasts the long-lasting fate and productivity of her cells with that of the woman who bore them. She connects those, and her human descendants’ unfortunate financial disposition, to current controversies in bioethics.

In the years following their mother’s death, scientists repeatedly approached her husband and asked her young children for blood samples to check the genetic material, to see if their DNA matched that of cell batches, or clones, growing in research labs.

The issue is this: her husband had but a third-grade education. The children didn’t know what is a “cell,” “HLA-testing” or “clone.”

The family had essentially no idea what the doctors who’d taken, manipulated and cloned their mothers’ cells were talking about, Skloot recounts. They thought the doctors were testing them for cancer.

Years later, when they learned that their mother’s cells were bought, sold and used at research institutions throughout the world, they became angry and distrustful. The problem was essentially one of poor communication, she considered.

“Even a basic education in science would have helped,” Skloot said. “Patients, they want to be asked, and they want to be told what’s going on.”

Well said!

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A Visit With My Oncologist

Today I visited my oncologist for a checkup.

Waiting to see her, I sat in a floral fabric chair by a matching wood veneer coffee table strewn with worn magazines – Architectural Digest, Better Homes and Gardens and some old Time issues – I couldn’t help but think of how I was feeling seven years ago.

Then I was anxiously waiting to know my blood counts – the white cells, red cells and platelets – to see if they were sufficient for my scheduled chemotherapy.

That January, my white blood cells were so low that some doctors thought I should enter the hospital for IV antibiotics. (I declined.) My mouth was so full of sores I could hardly speak or eat. My hair was gone and I wore a strange wig. My right arm was broken (yes, I’m right-handed) so I couldn’t write or type. I was pale, weak with anemia and covered with bruises.

Chemo-brain, which I’d never learned about in med school, was just starting to set in. Before then, I’d always taken pride in keeping up with medical and science journals. But I could barely muster the energy to take a glance at those heavyweights. Even regular magazines appeared fuzzy, a scary symptom for an oncologist who knows too well that breast cancer cells can spread upstairs.

I wanted my next treatment. I wanted to get it over with, to put the breast cancer behind me.

After a while my oncologist stepped out into the waiting area and guided me to the hall by her office. “The cells are low,” she said. “We’ll have to wait another week, that’s all.”

I knew she was right. But a week seemed like a lifetime to me then.

I understood that giving chemotherapy suppresses the bone marrow, the body cavity where blood cells form. If my white cells dropped any lower, I’d be at serious risk for bacteria in the blood or invasive yeast in my mouth and throat. If the treatment reduced the red cell-forming elements in the marrow, I’d become more anemic. Already I was on a medication that affected the function of platelets, the blood-clotting cells. If the platelets fell further, I’d be at greater risk for bleeding.

I had no choice but to wait. So I did. The next week I got my treatment, and we were back on track, at least for a while.

Today, sitting in a similar chair, I calmly read the arts section of the newspaper and started working on the crossword. I’d tucked the New England Journal of Medicine into my bag, thinking I should read that, but it didn’t seem right. I wanted to remember what it’s like to be a patient who doesn’t know if she’ll make it through.

Several of my friends, mainly women, are affected now by cancer that’s spread. They go to see their oncologists regularly, and sit and wait for their blood counts, and sometimes get their treatments. Most hold undeniably upbeat, positive attitudes. But the reality is tough-going, day-to-day and month after month, with no easy end in sight.

How much easier it is to look back on a situation – a tumor – that was removed in an early stage. My cancer treatment wasn’t easy, but I don’t regret it for a second.

When my oncologist took me into her office today we chatted for a while and then she examined me.

“Come back next year,” she said.

In my medical storybook, it doesn’t get much better than that.

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Why Give Blood?

Giving blood is something that’s close to my heart.

When I was 14 years old, I received seven units of packed red blood cells from strangers during and after spinal surgery. In 2003 when an orthopedist bravely cut the steel rod fused to my spine, readjusted it and inserted new hardware, I got another four units. So I’m keenly aware of this mitzvah, of giving blood. It saves lives.

Today, thousands will donate blood to honor the birthday of Dr. Martin Luther King, Jr.

As a practicing hematologist through 2006, I wasn’t aware of this phenomenon. Over the past week, I’ve scoured blood journals, blood-banking websites and even contacted a few leaders in the field, but found few doctors familiar with the tradition or what’s at least a trend as tracked by the all-knowing Source:

Google search Timeline view (1-16-10)

—–

It’s not clear exactly when this practice, now seemingly integrated with nationwide MLK National Day of Service events, began. The Orlando Sentinel published an article linking blood donation with MLK on January 14 1988:

Florida Blood Services campaign image January 2010

Donors giving blood from 2 to 7 p.m. Monday at the American Red Cross center, 341 White St., Daytona Beach, will be donating in memory of Dr. Martin Luther King Jr.

Each person will sign a scroll saying they donated blood in King’s memory. That document will be presented to Bethune-Cookman College during a special assembly Wednesday, said JoAnn Lord, Red Cross spokesman.

In response to a similar blood drive, Coretta Scott King wrote: ”The national holiday is a time for personal recommittment to do something — to reach out to your brothers and sisters in the spirit of our common humanity. Certainly the giving of blood so that others may live is a very important way of committing yourself to others.”

Today I spoke with Daniel J. Eberts, corporate communications manager for the Florida Blood Services.  Dan’s been working with that agency for over 22 years. “The goal is to create awareness of the ongoing need for blood,” he says. The agency collects blood every day of the year except for Thanksgiving and Christmas, he notes.

“Dan the Bloodman” – as Eberts is sometimes called – is not shy in his passion for blood donation. Rather, he’s on YouTube, singing on how you, too, can give blood.

On recent MLK Days the Florida agency has collected between 500 and 700 pints of blood, he reports. The holiday presents a special opportunity to gather additional, much-needed minority registrants for the National Marrow Donor Registry.

Eberts emphasizes how easy it’s become to sign on as a potential donor. “All you need is some cheek swabs,” he says. “There’s no blood sample required. Now, most of the hassle is with the paperwork.”

——

Here are some resources for people who’d like to know more about giving blood:

The American Red Cross provides information on when and where to donate blood, as well as helpful instruction on the process of giving for first-time donors.

The AABB, formerly the American Association of Blood Banks, covers transfusions and related therapies.

America’s Blood Centers – a large network of non-profit community blood centers.

The New York Blood Center – a terrific local resource for my neighbors, a pioneer in blood banking and resources for patients worldwide.

For those who’d consider bone marrow donation:

The National Marrow Donor Program helps patients with leukemia and other conditions find matching bone marrow donors.  The agency provides, also, financial assistance to some who can’t afford needed transplants.

—–

January is National Blood Donor Month. For those who can give, it’s never too late – the need is year-round.

And a personal note of thanks, from me!

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Why Medical Lessons?

One of the things I liked best about practicing medicine is that I was constantly learning.

Making rounds at seven in the morning on an oncology floor would be a chore if you didn’t get to examine and think and figure out what’s happening to a man with leukemia whose platelets are dangerously low, or whose lymphoma is responding to treatment but can’t take anymore medicine because of an intense, burn-like rash. You’d have to look stuff up, sort among clues and discuss the case with the team and other physicians.

And then you’d get to talk to the patients and their families. In the teaching hospital where I worked as a clinical oncologist, you’d encounter a mix of folks from my east side neighborhood, Russian and Chinese and Spanish-speaking immigrants with homes in all parts of New York City, and a spectrum of visitors from countries like Cambodia, Pakistan and Ecuador. Each case offered a window into another family’s values and concerns.

Being a patient is an entirely different sort of experience except that, like being a doctor, it involves learning about medicine, problem-solving and meeting all kinds of individuals.

As a child with scoliosis – a curved spine – I discovered early that some therapies don’t work as you might hope or expect. I wore a back brace for 4 years, 23 hours each day, and it didn’t do the job. Then, my parents took me to consult with most of a dozen male orthopedists. Their crassness, frankness and sometimes kindness impressed me. I realized that like any other humans – whether they’re dictators or shopkeepers – doctors vary in their personalities.

Today I recall one young doctor who helped me, a resident at the Hospital for Joint Diseases. He came by my room early in the evening of December 31, 1974 because I needed a new intravenous (IV) catheter. By then I’d been in the hospital for weeks after spine surgery; there was hardly a vein left for heparin, a blood-thinner. It turned out the resident came from a town on Long Island not far from where I lived. He spoke openly, about his experiences in high school, as he calmly and patiently patted down my arms and hands and legs and feet until he found a spot for the IV. He got the line in, and I got my medication.

Just before midnight, Dick Clark was on TV for a “New Year’s Rockin’ Eve.” The resident, whose name I don’t recall, came by to see how I was doing. He stayed for perhaps 15 minutes, for what seemed like no reason other than to keep me company. We counted the seconds and watched the ball drop on a small black-and-white TV suspended by a hinged-metal arm over my hospital bed.

He was compassionate, and that made me feel better. What a difference he, one essentially unnamable young physician, made in my experience of that New Year’s eve in the hospital, and in my life and work.

Today, December 31, I think of him as I navigate my path as a patient and as a doctor. I’m still learning about medicine, every day in each new year.

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How Well Do You Really Want to Know the “Red Devil?”

I know what it’s like to get the “red devil” in the veins.

You can learn about Adriamycin, a name brand chemotherapy, on WebMD. Or, if you prefer, you can check on doxorubicin, the generic term, using MedlinePlus, a comprehensive and relatively reliable public venture put forth by the National Library of Medicine and National Institutes of Health. If you’re into organic chemistry, you might want to review the structure of 14-hydroxydaunomycin, an antibiotic and cancer therapy first described 40 years ago in the journal Biotechnology and Bioengineering.

from the National Center for Biotechnology Information (NCBI) database, http://pubchem.ncbi.nlm.nih.gov, accessed 12/11/09.

from the National Center for Biotechnology Information (NCBI) database, http://pubchem.ncbi.nlm.nih.gov, accessed 12/11/09.

When I was a medical student, I studied some facts about doxorubicin hydrochloride, enough at least to answer a few questions during pharmacology exams. Later, as a resident in internal medicine, I knew the drug to be an anthracycline, a chemotherapy that intercalates into DNA, wreaking havoc in cells’ genetic material and reducing the replication potential.

As an oncology fellow, I prescribed and administered the clear, intense red fluid to patients with lymphoma and breast cancer. I learned to be careful: if the medicine slips from the intravenous catheter and enters the nearby, tender tissue below the skin, it can harm. The drug commonly causes hair loss and stomatitis; mouth sores can be so painful it hurts to eat, even when the nausea doesn’t squelch your hunger, or talk. Adriamycin affects the bone marrow, where blood cells are produced, and heart.

It’s not an easy drug; my patients knew this and so did I.

This month marks seven years since my first dose of Adriamycin, part of the “A/C” regimen that’s sometimes given to breast cancer patients. Was it worth going bald, getting anemia, sluggishness, mouth sores, chemo brain and all else that I experienced? Yes; I have no doubts. But I was lucky; my tumor was small and I needed only a few cycles.

I never knew Adriamycin as the red devil until a few years ago when a friend’s stepmother, undergoing treatment, used the term in an email.  She’s a woman who read lots of blogs and shared her experiences with other breast cancer patients online. I realized that despite working in an academic medical center and regularly communicating with physician-friends and oncologists at meetings, I still had a few things to learn.

Now that I’m writing about cancer, I wonder what sorts of information people really want or need to make informed decisions. I suppose some would like to know the chemical structure of doxorubicin before receiving such a potentially poisonous, possibly life-saving drug. Maybe a patient’s husband, or daughter, would seek details about the half-life, metabolism in the liver, side effects and more.

When I received my chemotherapy, I didn’t want to read about breast cancer or treatments. Rather, I chose an oncologist I trusted and liked. Then, for the most part, I followed her advice. But this sort of strategy’s not for everyone, particularly for patients who don’t know their doctors as I knew mine. Besides, most cancer patients aren’t already board-certified oncologists.

With so much available data at our fingertips, some patients will amass many resources about their condition. Others will be more passive, mainly listening to their physicians or perhaps, to friends and family members who do the research on their behalf. To a large extent, it’s a matter of personality –

Ultimately, you can’t know everything about Adriamycin until you’ve had it in your veins. Whether being familiar with the chemical structure makes a difference, is less certain.

What’s clear is this: with so much information at our disposal, there’s an opportunity for patients to help doctors make better decisions.

(all links accessed 12/11/09)

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Dinner with my Family

I come from a family of doctors. My dad is a retired physician. He’s a son of immigrants who attended med school on a scholarship. For decades he practiced internal medicine together with his younger brother, my closest uncle.  They cared for countless adults, gradually absorbing their patients’ spouses and siblings, children and grandchildren into their burgeoning practice.

Our dinners at home were punctuated by calls from the answering service about all sorts of emergencies. Every night at the end of the meal, my father would sit at the table sipping tea, returning patients’ calls to discuss their test results and concerns. Sitting in the next room, doing my homework, I heard about tumors, pain, headaches, heartburn and heart attacks. I learned about symptoms, blood tests and the concept of a differential diagnosis. You name it, pretty much any illness, and I might have answered a few questions. It was a bit like watching “House,” but on-stage, in my home.

Family gatherings centered on two things – food, and talk about medicine. We spoke of interesting cases (always nameless), challenging conditions and, even back then, the constraints of health care costs. My fiancé, now husband of over 20 years, couldn’t get over how debate over health care dominated our Rosh Hashanah and Thanksgiving feasts.

Now I’m getting to my point –

I grew up learning about medicine, and I understood the terms early on.  I’d been a patient, too, in and out of orthopedists’ offices and disfiguring braces in my adolescence, and then in the hospital with inexplicable fevers, blood clots and more.  All that, before becoming a physician, doing research and taking care of people facing the most serious of illnesses.

As a patient, I entered the doctor’s office armed with information. Seven years ago, when I learned I had breast cancer, I knew exactly what to do. The decisions, though difficult, were almost straightforward, buttressed by my knowledge and familiarity with the language of medicine.

Tomorrow, over dinner, I don’t want to talk about mammograms.  Or health care reform, or even the swine flu. But I do want to learn and exchange ideas.

People – patients and doctors both  – need to speak a common language. Just as at the dinner table, the conversation moves forward only if we keep our minds open, listen carefully and communicate with mutual respect.

Stay tuned!

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