Saturday, February 27, 2010

Goodbye Coronado, Hello Home

Today I will leave the San Diego area for uncomfortable airport  seats, and then the colder climes of home. I have suPhotoxpress_4219634rvived my 5 day adventure with the contents of my computer tote and a standard roll-aboard suitcase. These included:

  • 2 pairs of dress trousers
  • 1 pencil skirt
  • 4 knit tops
  • 2 knit cardigans
  • 1 denim jacket
  • 2 pairs of shoes (1 worn Tuesday en route)
  • 1 pair of jeans (worn Tuesday)
  • 1 additional top (worn Tuesday)
  • 1 trench coat (worn Tuesday)
  • 1 nightshirt
  • Assorted cosmetics
  • Appropriate undergarments
  • Netbook, Kindle, and Blackberry with their chargers

I could easily have packed two more tops to get another day’s wear out of each pair of trousers. So, in theory, I could have gone a week with just the contents of allowable carry-on bags.

That is the art of packing. For other upcoming trips I will not be quite as condensed (mostly because I have already been discussing footwear with other meeting attendees; I have a reputation to uphold, you know).

Photo courtesy of PhotoXpress.

Friday, February 26, 2010

Update on ZZZZ$

So yesterday I posted my disappointment that a daily email newsletter was pushing a probably harmless but unproven sleep aid.

So what did Google AdSense place with this post?

Wait for it…. You got it!

AdFail

Thursday, February 25, 2010

Catching Some ZZZZ$

This morning I received an email update from Pink magazine about Photoxpress_5668823sleep. This email article discussed and linked to a site for Alteril, “the sleep aid that can make all the difference in your sleep.”

 

So what is this miraculous substance?

Alteril is an all natural sleep aid formula that contains the ingredients shown to help you sleep. If you are one of the millions of people who have trouble falling asleep, get up in the middle of the night, or wake up groggy in the morning, Alteril may be the solution for you.

Many people have taken sleep aids that contain the ingredients found in Alteril for years for good, sound sleep and now it is available to you for only a fraction of the cost of prescription sleep medications.

Alteril contains three primary ingredients, L-tryptophan, melatonin and valerian, along with additional ingredients believed to help calm and relax you.

Alteril may help you get the deep, restful sleep you need and lets you wake up energized for the entire day. This combination of nutraceuticals interact with brain receptors and is believed to help produce deep restful sleep.

L-tryptophan is the amino acid metabolized to produce serotonin and melatonin; it is frequently blamed for the post-Thanksgiving nap, although this effect remains unproven and controversial.

Melatonin, produced endogenously, promotes sleep. The effects of exogenous melatonin are less clear. According to the government’s evidence report:

  • Evidence suggests that melatonin is not effective in treating most primary sleep disorders with short-term use, although there is some evidence to suggest that melatonin is effective in treating delayed sleep phase syndrome with short-term use.
  • Evidence suggests that melatonin is not effective in treating most secondary sleep disorders with short-term use.
  • No evidence suggests that melatonin is effective in alleviating the sleep disturbance aspect of jet lag and shiftwork disorder.
  • Evidence suggests that melatonin is safe with short-term use.

Valerian, the final ingredient, is the root of a plant used to “treat” insomnia and anxiety. Few studies of sufficient quality exist to judge its efficacy. Few reports of side effects or drug interactions exist, but, once again, it has not been rigorously studied.

Thus, this box appears on the Alteril site:FDA Warn

When I review those bullet points from their web site, it sure sounds like Alteril is intended to treat something; sleeping problems, for instance.

The Alteril site has some great suggestions for sleep hygiene that may be sufficient for most people with occasional insomnia. It reminds me of diet aids that are most effective when used with a prescribed diet and exercise program.

I realize that sponsors and promotions are part of the Pink business plan. I don’t mind getting a pitch for a book or service; I have actually bought some of this stuff. I do mind getting ads for a non-drug that at best can be said to be harmless. Because not everyone is going to look up other sources of information, like I just did.

Sleeping child courtesy of PhotoXpress.

PowerPoint Notes

So, still at my conference. My morning “workshop” on extracorporeal treatments for sepsis was not particularly enlightening.

  • Sepsis syndrome is associated with eleventy-billion evil humors in the blood and tissues
  • Clearing evil humors in controlled experimental models appears beneficial
  • Even though we can really only clear the central circulatory compartment (~30 m^2) while the capillary/lymphatic compartment that communicates directly with tissue is pretty much inaccessible (and huge at ~300 m^2)
  • But nothing yet seems to make much of a difference in humans, probably because we are genetically heterogeneous and are comparing real-life sepsis, not controlled, defined models

What did I learn? Well, if you want to use a figure in a slide, try to get it from an online source like a web version or computer generated PDF. If you must scan a printed copy, don’t start with a photocopy, and jack the resolution up higher than your scanner’s default. Jaggy

Cause what appears minimally jaggy on your computer is damn well unreadable when projected on a conference wall screen.

Wednesday, February 24, 2010

Learning New Stuff

I have lived a busy meeting day with sessions on acute kidney injury (AKI) stretching from 8am until 7pm. I learned a lot; as I noted on twitter, friends and colleagues greeted me as follows:

Pascale, what are you doing here?

Photoxpress_2811259See, my research has focused on diabetic kidney disease and kidney growth. Most recently a project on kidney development has, well, developed. AKI was not in my repertoire.

It is now. Our clinical service needed work, and I needed to learn more. Today helped, although I must admit that my brain was full a couple of hours before we quit meeting for the day.

I have 2.5 more days of workshops and symposia. I hope to bring home lots of information to help my patients. I hope to be refreshed by the sight and scent of azaleas and other flowers in bloom.

And maybe next time I hit this meeting no one will ask why I’m here.

Photo courtesy of PhotoXpress.

OMG It Is Lovely Here

DelCoronado So I am in the Hotel Del Coronado. Ocean breezes scented with some flower that doesn’t live in Omaha waft through my room.

I will spend all day in a conference room discussing acute kidney injury.

Today’s wardrobe items (photo available via the twitter feed) include a pair of black pants with subtle white and blue pinstripes. A wild-print tee in shades of blue, white, and black is up on top with a black cardigan. My black shoes will finish the outfit; if space had been less of an issue, a pair of cobalt blue patent pumps would finish the look.

The trousers are neutral enough that after 24 hours on a hanger I could wear them again with a different top, extending my carry-on wardrobe another day.

Later today I will discuss the sciencey stuff going on at the meeting. In the meantime, at least I see no dirty snow outside of the window.

And that’s a very good thing.

Tuesday, February 23, 2010

The Art of Packing

I officially start my 2010 travels today, blogging from Omaha’s Eppley Airfield. When I awoke, Omaha registered 9 degrees; I am heading to the San Diego area where the predicted high for the next 5 days hovers around 70. I will be making a stop in Denver, where I hope my only exposure involves the climate-controlled airport.

I managed to get clothing for this 5-day adventure into a roll-Jeansaboard bag and my computer tote. How? Careful planning and experience!

For today, I start with a pair of dark-wash, straight-leg jeans and a black leather belt that will fill all my needs during the trip. To these I add a comfortable, cotton top with elbow-length sleeves. It will be warm enough on the plane, but comfortable at my destination as well.FlowerTop 

My parents dropped me off this morning; had I been parking at the airport, I would have worn a sensible puffer coat and left it in the car. With delivery and pick-up service from family, I could forego that layer and wear a water-resistant gray trench, the perfect weight for windy evenings along the bay.GrayTrench

On my feet are a pair of 3” black patent slingbacks that are incredibly comfortable and easy to take off for security. They will work with most of my outfits, although I did squeeze in one pair of open-toed shoes. I have no idea when enough snow and slush will clear in Omaha to wear them at home.

I only needed 3 days plus the travel days for this meeting. I easily could have done one or two more days with a couple of additional shirts, as I will demonstrate in the days to come. Had this meeting required cold-weather clothes or dressier attire, I might have had to check a garment bag. In that case, my shoe wardrobe would also expand.

So challenge yourself to carry-on for meetings. Plan your wardrobe carefully (that is what a spreadsheet is for).

Monday, February 22, 2010

Learning In Lovely Location

Meetings, odds, and ends fill the day as I ready myself for the first trip of 2010. Tomorrow I will flee Omaha and its never-melting snow for a conference on continuous renal replacement therapy (CRRT). I have taken on responsibility for a program at Children’s Hospital and Medical Center of Omaha, and immersing myself in the topic for 3.5 days seemed a great way to get up to speed. The fact that the meeting is on Coronado Island,CoronadoBridge near San Diego, during the last dreary week of February is completely a coincidence and had nothing to do with my desire to attend.

If you believe the location of this meeting did not influence my decision to attend, I would like to sell you the Coronado bridge (see photo).

CRRT2010

CRRT has become the default treatment for most intensive care unit patients with acute kidney injury (AKI). It makes sense that if you unstable enough for an ICU, then you are unstable enough to not tolerate intermittent hemodialysis. AKI is the focus of a special section in the just-published February issue of ASN Kidney News, and an article by Ashita Tolwani (starting on page 12) focuses on this very issue.

The role of CRRT in AKI seems fairly clear; we are currently exploring the best way to deliver it to patients ranging from 10 to 300 pounds. Various options for hardware exist, and their relative advantages and disadvantages must be explored. CRRT may also be able to play a role in sepsis and other conditions, and I will attend sessions discussing these cutting-edge issues.

For the rest of the week my posts will deal with CRRT, packing for such a trip, and the lovely weather in Coronado. I will be in a hotel conference room from  7am till 7pm while I’m there, but at least when I look out the window I will not see dirty snow.

Saturday, February 20, 2010

Too Smart To Care?

A lot of us in “the ivory tower” have paid attention to the case of Amy Bishop, a junior faculty member at University of Alabama-Huntsville who “allegedly” shot several members of the department that would not grant her tenure. Huntsville-ColorAs the week progressed, more behavioral anomalies and interactions with the law have come out, suggesting that Amy Bishop may not be the most stable person on the planet.

Her lawyer summed things up nicely, I thought, in an interview last week:

In an interview Thursday with CNN affiliate WHNT after visiting Bishop, Miller said, "I just think the case speaks for itself." He added, "I think she's wacko."

In yesterday’s article, the lawyer began back-tracking a bit:

The defense attorney appointed to represent an Alabama professor accused of shooting her colleagues said Friday he regrets describing her as "wacko."

But at a news conference, Roy Miller said "something's wrong with this lady."

All of this seemed predictable. Lawyer says something truthful but, perhaps, not the best statement for his client, then soft-pedals it a bit. Obviously, I would not be writing right  now if the article had not gone on:

Discussing his client's mind, he said that doctors of biology "have got, in my estimation, high IQs -- and the high IQ in my opinion is sometimes not good for people." He said Bishop sometimes is "so focused on the mental basis" that she "does not know what's going on around her."

So if one’s IQ is above average, high even, one is more prone to mental instability or emotional distress? I can find no scholarly work proving an association or correlation of IQ and mental illness. The question has been raised on answers.yahoo.com in several wordings with participants chiming in. The public responding on these websites seem to believe that intelligence associates with insanity. This lawyer may have found a brilliant defense for his client.

Amy Bishop was too smart to be mentally stable, too focused on her own intellectual thoughts to consider her interactions with others and their impact. The evil scientist stereotype lives on!

Will Baby Einstein videos produce a generation of mass murderers?

As someone who works in a building filled with doctors and scientists, I guess I should be afraid to go to work every day. Never know when one of these smart people will snap. I’m surprised I never assaulted a customer at IHOP, because my own IQ is pretty high.

I would love to hear from anyone with real data regarding these issues.

Friday, February 19, 2010

Fond Farewell to the Wizard

DSCN0002

Yesterday we lost our 6-month-old kitten, Ozzie. We had lived with him for about 4 months.

He had developed ascites, fluid in his belly, about 3 weeks ago. After reading about the causes of this condition online, none of which are treatable, and not being absolutely certain it was not just fat (he was still eating like a horse), I decided to live in denial until he showed other signs of illness.

Those came about this week. Wednesday evening he had trouble jumping up on the sofa, and I vowed to take him into the vet the next day. Unfortunately, he was minimally responsive the next morning. I rushed him to the Animal ER where feline infectious peritonitis , an incurable condition, was diagnosed.

Within an hour he died via euthanasia while I stroked his head and whispered about what a good cat he was.

Between this event, a visiting professor, and my people patients, my time online to blog has been a bit limited.

Goodbye, Ozzie. We didn’t have you long, but we loved you bunches.

Wednesday, February 17, 2010

Use Me

I get a daily mailing from Pink, a web-site (formerly a print magazine) dedicated to women in business. One daily email included the following on shameless promotion via bloggers (excerpt below):

Little Pink Book

February 17, 2010
Get Blogged About

“Social media and blogs are just as important as traditional media outlets now,” says Amy Binder, president of the $12 million PR firm, RF|Binder Partners. “Some companies don’t want to talk to bloggers, they are afraid of what they’ll say. But they’ll say it anyway, even if they don’t talk to you. That world exists and you can’t ignore it. There’s not one company out there that can afford to ignore online media.”

Bloggers can be your best advocates, says Binder, not only in boosting your branding but protecting your business. Her best tip? Read blogs. “You need to know who is most influential, and who is most substantial. And bloggers take it personally if you pitch them and you’ve never read them.”

So how do you get bloggers to write about you?

WebMarketCentral.com, ModishBlog.com, InformationWeek, BuildaBetterBlog.com and Understanding Marketing suggest strategies like pitching to their niche and becoming a user before you pitch.

Which bloggers are best to pitch in your industry? Check out Technorati for the most commented blogs and Quantcast for most viewed.

The influence of a blog is assessed by page views and comment numbers. A thriving blog brings in readers who care and want to discuss the content. In the excerpt, they are called “users” rather than “readers” because of the interactive nature of the blogosphere.

I write these posts for me. Writing helps me think, and it gives me an outlet for anger, humor, and awe. I put it out here on the web because I hope it will make someone else think as well. I also hope my users feel free to comment, even if they want to tell me I’m an idiot! And if they want to do that peudonymously or anonymously, so be it!

This week I have finally gotten analytics into my blog. I will now be able to see how many people are looking at my stuff, among other wonderful, googley things. I hope I can make this blog better for me and for my users. Oh, it will remain a collection of whatever catches my fancy, but I will know more. And for a researcher, data rules!

Another Lame-Ass E-Card Post

OK, I was out-of-town last weekend and picked up the clinical service Monday morning. I wanted to have some easy posts ready, especially given the festive start to the week: Valentine’s day, Presidents’ day, and Mardis Gras.

I promise this will be the last someecards post for awhile (“When you care enough to click send”). I couldn’t resist this one. Someone once told me that you know you are old when you realize no one would pay to see you naked.

I’m so there. Gravity is a persistent and aggressive foe.

Sorry no one wanted to see your tits at Mardi Gras

Tuesday, February 16, 2010

Today It’s Good To Be Fat

Mardis Gras = Fat Tuesday.

Party today because tomorrow starts that fast in the wilderness.

You must be excited for the one day of the year when your behavior makes sense

Let the good times roll.

Sunday, February 14, 2010

Sentimental Holiday Greetings

If I had balls, I'd shave them for you this Valentine's Day

Happy VD, Everyone!

Note: that line was much funnier when they were called venereal diseases instead of sexually transmitted infections.

Ah, the good old days!

Saturday, February 13, 2010

Two Opposing Forces On A Road Trip

We are in the Twin Cities so my son can see the University of Minnesota. He wants to study engineering, and he (finally) narrowed his list to about 10 campuses.

After living in Minneapolis many years ago, I am interested in seeing the campus. The boys have consented to having me along for this first college visit.

I am needed to referee, I am sure.

See, my husband is interested in things like the buildings, the library, and the academic programs:

MN Engineering

My son also wants to ascertain the level of shenanigans and collegiate fun (which hubby considers unimportant):

MN Homecoming

It may be a long weekend in our car…

Thursday, February 11, 2010

More Thoughts From The Movies

The GiftJuiliejulia

I always try to tell my kids something they can easily purchase for me when a gift is necessary. This past Christmas I suggested the DVD of Julie & Julia, a movie I never got to the theater to see.

On Christmas morning I found out both of my offspring had wrapped this one for me. My son described his sojourn to get that which his mother wanted. He traipsed from store to store, and had to “shove” a rather large woman to get the last copy at Best Buy. My daughter had just picked it up at Target where “they had, like, a million copies.”

Needless to say, I kept the one from my son.

The Movie

Reviews of the film raved about the Julia portions, especially Meryl Streep’s performance (big surprise there), but found the Julie segments wanting. I would agree that the story of Julia Child and her book for us “servantless Americans” soared, but the depiction of Julie Powell cooking and blogging her way through the tome also hit home for me (and who doesn’t love Amy Adams?).

Watching the movie got me thinking, because I used to cook. Not just throw stuff on the table, but plan real food prepared without a microwave. That stage of my life hit the yuppified 1980’s, so my culinary bible was not Mastering the Art of French Cooking.

The Book

SilverPalate

On a shelf in the kitchen, where I keep the tattered cookbooks I use the most, sets an original copy of The Silver Palate Cookbook. A 25th anniversary edition is now available with color photos; my copy remains black and white, with line drawings and hospitality suggestions in the inner margins.

I remember coming home from work as a resident physician, telling my husband to eat some chips, and then conquering a wonderful, complex dish from its pages (after a much needed trip to some gourmet specialty shop). Cooking could be risky and creative, but no one ever died (unlike my day job).

I realized that with my youngest child 17 and ready to leave the nest, I could do some more recreational cooking again. I pulled my book off the shelf, and it fell open to Mediterranean chicken salad. This mixture of chicken breast, nicoise olives, tomatoes, and olive oil not only pleases the palate, but also provides a packable lunch and some of the best chicken stock you will ever use.

I am still exploring my cookbook again, often with Meryl/Julia playing in the background.

The Blog

If you are reading this blog, then you know that I am familiar with the world of Julie as well. This part of the movie did not get respect in reviews. My spouse cannot understand why I spend anytime online blogging (or tweeting, or anything else), and it seemed that many of the reviewers felt the same way.

During the film we also meet Julia’s pen-pal, Avis De Voto. Their first face-to-face meeting is depicted in the move, but Julia wrote volumes of letters to Avis before they actually met. Julia Child found a friend through written correspondence; how is that different from the friends I have found online?

Admittedly, many of my tweeps use pseudonyms, so I do not know their real-life identities. But how much does a real-life name matter when you need to bitch about your job or shout out a triumph? Not that much.

The Conclusion

I have watched this movie “several” times now, often while preparing some complex dish. I see the parallels not only between the movie’s characters, but also with events in my present, absolutely non-fictional life. And I blog about all of it here.

Bon Appetit!

Wednesday, February 10, 2010

Looks Like We Have A Fight!

WrestlingMatch

We have a match, folks!

Dr. Isis, that shining example of spousal devotion, maternal instinct, red-hot science, and beautiful shoes, will be in one corner. Facing off against her will be Marty Frank, Executive Director of the American Physiologic Society, science policy guru, and all-around nice guy.

[Please note photo is an artistic rendition and not the actual participants]

Here are their current statistics on Twitter:

@drisis first tweeted November 4, 2008. She has 977 followers and has posted 3069 updates.

@ExecDirectorAPS began twittering July 21, 2009. He has posted 329 updates for his 111 followers.

The challenge: sign up new Twitter followers (Tweeple or Tweeps) during Experimental Biology in Anaheim.

I will certify the number of followers each has at 7:59 am PDT on Friday, April 23, just before on-site registration opens at the meeting. When a predetermined deadline has been reached, I will once again check the number of followers for each. Whoever has the most new followers will win. For those of you more mathematically inclined:

New followers = N(deadline) – N(start)

I am letting the fighters determine the “prize” which may also determine the deadline. For example, if a tweet-up with the loser buying drinks is involved, we should probably end on Tuesday to allow that event to occur. If clown services at some point in the future are involved, well, we can go to the last minute on Wednesday.

Rules? Do we really need rules?

Yes, the goddess can pull off a lot of wackalunacy with her cloak of pseudonymity. Marty must maintain some degree of decorum, but he has the bully pulpit that comes with being a recognized authority figure, at least among APS members.

Will institutional power trump general hotness? Will stilettos kick sensible shoes? Who will win? Who will bleed?

Stay tuned for more!

Tuesday, February 9, 2010

Throwing the Gauntlet

EB2010Experimental Biology approaches, so shenanigans must be planned.

For this year’s meeting a tweet-off has been proposed:

Isis the Scientist, the hottest goddess of science, versus Marty Frank, Executive Director of the American Physiologic Society.

Isis sidebarVS. APS Logo

Goal: enroll the most new followers on twitter during the meeting.

As a reasonably neutral party who already follows both of these distinguished individuals on twitter, I volunteer to moderate the contest as follows:

  • Contest will begin at 0800 Pacific time on Friday, April 23, when on-site registration opens
  • Contest will end at 0800 Pacific time on Wednesday, April 28, so a winner can be determined before I have to head to the airport; we can move this back to noon on Tuesday if necessary for the “prize”
  • Shameless publicity stunts are not only permissible, but encouraged (especially if free drinks and/or public nudity are involved)
  • I will provide updates online and via twitter throughout the meeting; if APS allows, I may even post it on the whiteboard with the official registration numbers
  • The final “prize” will be negotiated by the participants; perhaps the loser buys at a tweet-up  or provides clown services at a party?

So, you two, are you up for it? Cause I’m ready for some game faces and trash-talking!

Monday, February 8, 2010

Super Game, but What Dat Ad?

SBLogoWho Dat winning the SuperBowl? In a really great game?

The Saints rocked Miami. The game entertained, and calling on onside kick to start the second half took gonads. Well done!

Was anyone else disappointed by the SuperBowl Ads?

My personal favorite was from Monster.com and involved a musically-inclined beaver.

Sorry I couldn’t get the video to embed correctly, so you will have to click the link above to see it.

Yes, the lucky little beaver gets a hot blonde in a hot tub as the ultimate success symbol. Sexist? Yes, but the whole ad was cute and funny and illustrative. This is one driven beaver, even though his career goals are different than those other rodents working on the dam. Monster.com is, after all, a career site, and this little guy got work, dam it. (Get it? Beaver, dam…)

Budweiser and Doritos both had some spots, and all were, well, OK. Nothing stellar, but… OK.

The ones that keep showing up that I just do not understand?

GoDaddy

Those from GoDaddy.com. They have paid money for Danica Patrick as their spokesperson. The ads feature her and other hot “I wannabe the GoDaddy girl” women in various states of undress. Click the icon if you want to see the TV ads or the less censored internet versions.

What do these ads have to do with anything? GoDaddy deals with internet domains. I realize that sex sells almost anything, but I keep looking at these spots thinking WTF? Are they only trying to register porn domains?

I guess Danica Patrick and a hot blonde masseuse in the spa do have some parallels with the Monster.com beaver and a hot blonde in a hottub. But the latter felt cute; the first one skanky.

FAIL GoDaddy. You need new marketing. Someone who is not a 13 year-old boy.

Friday, February 5, 2010

More Thoughts on HeLa

HeLaBook

I just completed The Immortal Life of Henrietta Lacks, by Rebecca Skloot. It is a must-read for a number of groups, including those who study cancer, those who use cultured cells, anyone who performs clinical research, and anyone in healthcare.

I read fast, but especially in this case. Many of my online peers had pre-release copies and have blogged about the book for weeks. I also wanted a review for the March issue of ASN Kidney News with its special section on kidney disease research issues.

Immortal Life addresses many issues relevant to medicine and life in the 20th century. Poverty and racism and access all influenced Henrietta’s (I feel like I’m on a first-name basis after reading her story) care and that of her children. As someone who works in basic science (and, for a couple of years, in a carcinogenesis laboratory), the history of tissue culture was fascinating. I learned far more about the development of human subject protection than I did from my required clinical research training, and in a far more memorable way.

Ms. Skloot’s time spent with Henrietta’s family paid off in the narrative in a big way. Henrietta is no longer just someone who died of cervical cancer; she becomes a beautiful, lively woman who dressed well and kept her finger- and toe-nails perfectly manicured in flaming red (a trait with which I can easily identify). Her story and those of her family, in particular her daughters, also drive home their mistrust of the medical and science professions.

The development of their mistrust of the biomedical enterprise brought me back to a book from last summer, Unscientific America. Mooney and Kirshenbaum argue that the public mistrusts scientists because we are, in general, so bad at communicating with them. Examples of bad communication abound in Immortal Life; even when supposedly getting “informed consent” for testing on Henrietta’s descendents, it is clear the family has no clue what will be done with their blood. When Deborah, Henrietta’s daughter, first visits a laboratory at Hopkins to find out what happens with her mother’s cells, the investigator gives her an autographed copy of a text he wrote on genetics, something she cannot fathom. (A second visit in the 21st century works out better and diffuses some of the concern and anger of the family members.)

I had a different argument after Unscientifc America, namely that scientists and other biomedical researchers had lost the public trust:

We were promised “better living through chemistry.” While DDT could zap mosquitoes and eliminate malaria, it had detrimental effects on the environment. The green revolution that has allowed the overpopulated world to be fed has taken its toll on the land. People now mistrust the agribusiness industry. In medicine, it seems like papers trumpet polar opposite results; the public can’t decide what to believe, and thus decides to believe no one.

Add to that perception experiences like those of the Lacks family, especially her daughter Elsie, and others of the time. More than a decade after Nuremburg researchers were still injecting people with cancer cells without telling them what they were. The Tuskegee syphilis experiments had just come to light. Today, when institutions have offices devoted to patents and business discovery development, patients donating tissues with appropriate informed consent want to know the value of their cells.

The Immortal Life of Henrietta Lacks reads like a novel but is absolutely true. It is must-reading for those involved in medicine or science, especially researchers working with human subjects (what a depersonalized term!). I believe it might help the general public as well, showing them the evolution of protection of their rights and dignity should they choose to participate in biomedical research.

This book could be a first step toward regaining some public trust.

And I swear I will not complain (at least not as much) the next time I have to answer all of those questions for our Institutional Review Board.

Happy Twitterversary!

At 21:20 CST today I will celebrate one year of tweeting.

twitter-logo When I enrolled, I could not comprehend the value of these short comments. Little did I know how twitter would become a part of my existence, complete with friends and colleagues who make me happy and sad and angry.

Until you try it, the whole concept sounds utterly ridiculous. What can you say in 140 characters, really? And how many people do you really reach?

At the time I write this, nearly 200 people follow my thoughts on twitter. If I tweet something particularly notable, my followers may retweet it, with the potential to reach thousands of tweeple in a manner of minutes. That impact is far broader and faster than an email chain.

I am now well over 2000 tweets. Some are interesting, many are drivel. But I have enjoyed them all.

Tuesday, February 2, 2010

Preventable? Death

This week a jury in Oregon deliberates the fate of the parents of Neil Beagley. Neil Neil died of complications of posterior urethral valves (PUV), a blockage of the male urinary tract. Last summer (2009), the parents of his niece were tried and convicted in her death from pneumonia and sepsis in infancy, with her father spending just under 2 months in jail for second-degree criminal mistreatment.

Why so many childhood deaths in this family? They belong to Followers of Christ, a group of approximately 2,000 in the Oregon City area who believe in healing by prayer and other spiritual means. Neil’s father and others in the group have been quoted in the press as saying going to the doctor shows a lack of faith. A large number of preventable childhood deaths led Oregon to modify its shield laws in 1999. These laws had previously allowed parents to use “spiritual healing” as a defense in the deaths of their children; the trial of Ava Worthington’s parents was the first test of these laws:

The Followers of Christ deaths prompted a firestorm in the 1999 state Legislature over religious freedom, parental rights and the state’s responsibility to protect children. After months of debate, legislators passed a compromise bill that emerged in the final days of the session and was quickly signed into law by Gov. John Kitzhaber.

The 1999 law eliminated Oregon’s “spiritual-healing defense” in cases of second-degree manslaughter, first- and second-degree criminal mistreatment and nonpayment of child support.

Pediatric nephrology in-the-news always catches my eye. The ethics of refusing care come up frequently in nephrology as well, even when chldren are the patients. I had to learn more about this case!

The Disease

PUV results in complete posteriorurethralvalves-fullblockage of the urinary tract (click on the diagram for a bigger version at the original website). It only occurs in males. The obstruction leads to dilatation of the bladder and ureters; urine may also reflux up the ureter rather than exiting the bladder during urination. The condition is most often diagnosed because of an abnormal prenatal ultrasound; after birth, a weak urinary stream, urinary tract infections, or protuberant bladder may lead to the diagnosis. Rarely, it is missed in infancy and the child presents with deterioration of kidney function.

Treatment first requires relieving the obstruction so urine can exit the body. Some boys may have mild renal dysfunction and do well; however, most will have some damage to the kidneys leading to kidney failure. Since chronic kidney disease has few symptoms before stage 3, monitoring growth and laboratory studies in these children is essential to prevent complications.

The Faith

Wikipedia provides a description of this religious group based in Oregon City, excerpted here:

The Oregon church was founded in the early 20th century by the Reverend Walter White, a "powerful, charismatic preacher" who led a congregation which broke away from a Kansas church of the same name in the 1940s.[2][3] White and his congregation moved to Oregon, and built a house of worship on Molalla Avenue in Oregon City, now a suburb of Portland. White died in 1969, and the church has functioned without a minister since then.[4] In addition to the denomination's Oregon City church building,

Estimates of the church's membership range from 1,200[4] to 2,300[5] A congregation of approximately 500 members is found in Caldwell, Idaho,[6] though the two churches have not been in communication with each other for about 40 years. The Oregon City church has secluded itself from all other churches that share its name.

The church is Pentecostal in origin, and believes in a literal interpretation of Scripture, including in the power of faith healing -- in the context of Pentecostal Christianity, the use of prayer and laying on of hands to cure illness.[3] Unlike many other churches which include faith healing as part of their doctrine, the Followers refuse all forms of medicine and professional medical care. The church practices shunning of those who violate or challenge church doctrine, including those who seek medical treatment; it has been alleged that many Followers clandestinely see doctors and dentists in defiance of church teaching[4]. The church is also known for legalism[7] and a male-dominated society.[4] 

Since the death of White, members of the church have increasingly isolated themselves from the community at large. The church no longer recruits or admits new members.[2] According to church members, children raised in the church attend public schools, but don't socialize outside the church once reaching middle-school age.[8]

Oregon health authorities first noted the church because of its infant mortality rate ~26 times that of the rest of the state. Investigation of deaths from the late 20th century led to the change in Oregon’s shield laws in 1999.

Because of its insularity and indoctrination, some have described this church as a cult.

The Boy

The older sisters of Neil, including the mother of Ava, attended public schools; however, Neil was home-schooled exclusively after third grade:

On the stand, the Beagleys offered stories of a son who once proclaimed that he didn't need to go to elementary school because he already knew everything.

Public school with its health requirements might have led to an earlier diagnosis; his short stature might have prompted concern among teachers.

He spent his afternoons working with his father in the business Neil hoped to own someday and working on a 1973 Camaro. He was very close to his father, a man who never visited a medical doctor unless it was required for work and who once told detectives that seeking medical care showed a "lack of faith." Neil spent time with his family and other relatives, all of whom are Followers of Christ. In short, this child had no contact with the world outside of this faith, other than social workers trying to avert unnecessary deaths of children within the community.

Other testimony noted his strong faith. Neil read his own bible faithfully, keeping it near while on his deathbed.

The Death

The prosecution describes this as an unnecessary death due to a treatable illness. The death of Ava was clearly tragic, since antibiotics could have cured her acute illness, leaving her to lead a long, healthy life. As a toddler, she had no input into the decision process. Is this as true of Neil?

Neil had a chronic disorder; the treatment of it would make him technology-dependent for life. He would receive dialysis until he got a successful kidney transplant or died. His life would require drugs and frequent medical visits. I have treated children with this disorder, and they lead complicated but worthwhile lives.

Neil never stood a chance.

The insular nature of his upbringing and the rigid beliefs of his parents would not have permitted him to be treated optimally. Had his parents permitted treatments they could be shunned by their community which was their life, their salvation. At the age of 16, Neil probably would not have followed a treatment plan himself, given his head-strong nature, religious beliefs, and lack of exposure to other viewpoints. Even if, somehow, treatment had been enforced, I suspect he would have stopped when he reached the age of majority. And that would have been his right.

Neil’s death could have been delayed a couple of years, but prevented? Probably not in the context of his culture and upbringing.

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All of these are moot points, mere speculation on the part of someone with no direct knowledge of the community, the family, or the patient. Take them for what they are worth in that context.

Much of the information regarding the case was taken from stories at OregonLive.com, linked to in the text above.

Monday, February 1, 2010

Poken Fun!

Faithful readers know that my daughter is majoring in Communication with a focus on public relations. Friday she went to a conference, and mid-morning texted me from the social media session:

We need pokens! Google it, and order!

Really, it takes much less than that to get me shopping.

Pokens take the place of business cards (click here for great video explanations). These electonic gizmos, when you click the hands together, will exchange all electronic contact information and maintain a timeline function as well. So if you are trying to remember someone you met at a meeting 2 weeks ago, you can scroll back to that date to pull up their information.

Another cool feature: the poken information is updated every time the person in question updates it. So if I change my email address, my poken contacts automatically get the new one!

Of course, choosing a poken must be the hardest part:

PokenZooFunAfter much deliberation (accompanied by a fine Malbec blend from Chile), my offspring and I made our choices. She went with the dragon (It's hard tell if he's a good boy or bad boy. He's got the horns, but the smile, too.), while I purchased the pink alien (A recent addition to the Zoo's Area 54, we think she's a she), although it was a tough race with the green alien and voodoo pokens. 

They also sell less “cute” pokens:

PokenZooPulse

In addition to serving their poken function, they act as flash drives with up to 2GB of storage. The colored versions are sleek and cool, although all are black with just the poken 4-fingered hand to give them away when capped. The plain one can be custom branded as well.

I may get one of these plainer devices for my more “professional” online persona. My snarky “personal” online self will be the pink alien for now.

So snap a poken on your lanyard. It makes adding online friends and acquaintances easy. If you see me and my alien, let’s do the “high four" to exchange data!