Shout Outs

Updated 3/2017 -- photos/videos and all links removed (except to my own posts) as many no longer active.

Afternoon Nap Society is the host for this week’s Grand Rounds. You can read this week’s edition here.

………….This week, Grand Rounds is mine, and in selecting blog posts, I evaluated submissions based on their topicality, writing style, and personal appeal. What I look for in a blog as an ePatient may differ from what a physician or even another ePatient looks for; however, the goal of Grand Rounds is to foster dialogue, and more and more we are learning that in order for a healthcare dialogue to be truly effective, it must include the patient perspective. As a result, Sean Ahrens, an ePatient and software designer who is building Chronology, an online network on which patients with Crohn's and Colitis may connect and learn from one another, opens this week's session….….

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In the current JAMA, a thoughtful commentary article by Traber Davis Giardina, MA, MSW and Hardeep Singh, MD, MPH:  Patient's direct access to test results - pros and cons. (subscription necessary for full access)

In the outpatient setting, between 8% and 26% of abnormal test results, including those suspicious for malignancy, are not followed up in a timely manner. Despite the use of electronic health records (EHRs) to facilitate communication of test results, follow-up remains a significant safety challenge. In an effort to mitigate delays, some systems have adopted a time-delayed direct notification of test results to patients (ie, releasing them after 3 to 7 days to allow physicians to review them).

On September 14, 2011, the Department of Health and Human Services jointly with the Centers for Medicare & Medicaid Services, the Centers for Disease Control and Prevention, and the Office for Civil Rights proposed a rule allowing patients to access test results directly from the laboratory by request (paper or electronic).  .……….

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For those of you like me trying to follow the face transplant recipients and procedures progress, CBC News recently had an update on one of them:  Conn. woman mauled by chimp praised for new face

…….."I've had people tell me I'm beautiful," Nash said in the interview that aired Monday. "And they were not telling me I was beautiful before."
Nash said she was cheered by a simple "hello" from a child while she was shopping recently.
"That didn't happen before," she said. "It was nice. The little girl was saying 'hi' to me. ... I'm not scaring anybody." ……

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This article from Science Daily caught my eye and I look forward to when it might be possible in humans:  Cleft Lip Corrected Genetically in Mouse Model

Scientists at Weill Cornell Medical College used genetic methods to successfully repair cleft lips in mice embryos specially engineered for the study of cleft lip and cleft palate. The research breakthrough may show the way to prevent or treat the conditions in humans. ...…….

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H/T to @medicallessons for this tweet “Is a Ban on Drinking Water Hours Before Surgery Necessary? (maybe not) -- ttp://nyti.ms/uTAQgl”  The link is to a New York Times Q & A article by C. Claiborne Ray:  Cool, Clear Water

Q. Is it really necessary to prevent patients from drinking water for many hours before surgery?

A. The well-known rule that a preoperative patient should have “nothing by mouth after midnight” was not based on scientific evidence, and many medical organizations now have more flexible guidelines. For example, American Society of Anesthesiologists guidelines generally permit clear liquids until two hours before surgery. .…….

Be sure you ask your surgeon and anesthesiologist what the rule is for you as the above is for healthy individuals.  It may vary depending on your set of health problems and the surgery you are scheduled to have.

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I love watching my dog shake water off. 

H/T to @DrVes for the link to this NPR story by Robert Krulwich:  Shake It! How Dogs, Cats, Even Hummingbirds Keep Dry (photos, including the one below, and video)

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The Alliance for American Quilts received 119 quilts for it’s 2011 "Alliances: People, Patterns, Passion" contest.   You can see all the quilts here. My entry was “Redwork Quilt” and is included in this week’s (Week Two --Mon, Nov. 21- Mon, Nov. 28) quilts being auctioned off on eBay.

All contest quilts will be auctioned via eBay starting on Monday, November 14, 2011 and ending December 12, 2011. All proceeds will support the AAQ and its projects. ….

Week THREE auction guide: Monday, November 28 - Monday, December 5  ……

New this year: "Alliances" contest artist's were offered the chance to record their artist's statements thanks to the generous services of AAQ Business member, VoiceQuilt, visit them at www.voicequilt.com.

Recovery of Sensation Post-Facial Transplantation

 Updated 3/2017-- photos and all links (except to my own posts) removed as many no longer active.

Have you ever lost your sense of smell or taste?  Recall how it feels when your face/mouth don’t work properly until the nerve blocks wear off after a dental procedure.

Those are all things (and more) a facial transplant patient has to deal with.  The article discussing recovery of sensation after facial transplantation in the May issue of Plastic and Reconstructive Surgery discusses this topic (first reference below).

In addition to reviewing their own face transplant patients (n=4), Dr. Maria Siemionow and colleagues did a literature review (English literature for peer-reviewed articles published between 1940 and 2010) of sensory recovery after various standard nerve repair techniques. 

These other nerve repair techniques included repair of the peripheral branches of the trigeminal nerve; sensory return after free tissue transfer (ie noninnervated flaps, including radial forearm, lateral thigh, anterolateral thigh, latissimus dorsi, trapezius, et al and innervated free flaps, including radial forearm, anterolateral thigh, and rectus abdominis musculocutaneous flaps); and sensory recovery following replantation of scalp and forehead.

Image: Pathways of sensory recovery in face transplantation are summarized.

(1) Direct sensory nerve growth through microsurgical nerve repair.

(2) Trigeminofacial communications.

(3) Nervi nervorum of the facial nerve.

(4) Somatic afferents of the facial nerve.

(5) Adrenergic plexus of the vascular pedicle.

Siemionow and colleagues report that only one of the four face transplant recipients underwent direct repair of the sensory nerves.  In the other three cases, it was impossible to reconnect the nerves because of technical difficulties or the severity of the patient's injuries.

Even so, all four patients began regaining sensation in the transplanted face as early as two weeks after surgery and had normal or near-normal sensory function by the end of the first year.

The extent of recovery was similar to that achieved with simple repair of injured sensory nerves in the face-and even better than that of grafting procedures where tissues are transferred to the face from different areas of the body without reconnecting the nerves.

Siemionow and colleagues note in their discussion:

Based on the results of our comparative analysis, we can conclude that, in the absence of extensive soft-tissue injury, simple repair of facial sensory nerves leads to restoration of nearly normal sensation. ….. Interestingly, face transplantation is the only clinical condition where, in the absence of sensory nerve repair, good functional outcome is achieved despite severe trauma causing soft-tissue and sensory nerve damage.

As they also note (bold emphasis is mine)

An important issue that emerged from the comprehensive review of the literature is an evident lack of universal methods of neurosensory assessment and an urgent need for establishment of guidelines that will help with comparative analysis of the sensory recovery data. This applies to the reported cases of face transplantation, where documentation of sensory recovery is either marginal or overlooked.

For the face transplants, as with head injury patients, the olfactory nerve function needs to be assessed as well and it wasn’t in this study.   If the person can’t smell smoke or gas leaks, then extra care or caution has to be taken at home.

REFERENCE

Pathways of Sensory Recovery after Face Transplantation; Siemionow, Maria; Gharb, Bahar Bassiri; Rampazzo, Antonio; Plastic & Reconstructive Surgery. 127(5):1875-1889, May 2011; doi: 10.1097/PRS.0b013e31820e90c3

Discussion: Pathways of Sensory Recovery after Face Transplantation; Chong, Tae; Plastic & Reconstr Surgery 127(5):1890-1891, May 2011; doi: 10.1097/PRS.0b013e31820e88c9

ASPR Press Release, May 9, 2011:  Sensation Recovers to 'Near-Normal' After Face Transplant, Study Finds

Setting Goals, Rehabilitating After Brain Injury; NPR, May 16, 2011

Shout Outs

Updated 3/2017-- photos and all links (except to my own posts) removed as many no longer active. 

Kim, Emergiblog, is the host for this week’s Angry Birds issue of Grand Rounds! You can read this week’s edition here (photo credit).

Welcome to the Angry Birds edition of that weekly compendium of medical blogosphere goodness, Grand Rounds! I’ve chosen my addiction du jour, Angry Birds, as the theme for my 7th turn as host.

For those who are not familiar, Angry Birds is a game in which Green Pigs steal Bird eggs, causing the Birds to become angry, start screeching and begin catapulting themselves from sling shots in an attempt to destroy the Pigs, who house themselves in various structures and giggle at the Birds.

Got it?
Okay then! Let’s get started!  ………..

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Last Tuesday @EvidenceMatters alerted me via twitter to a panel discussion regarding Vitamin D “Vigorous panel talk: Boosting Vit D - Not enough or too much? Liveblog: http://bit.ly/gL9JuX Video: http://bit.ly”

The webcast of the panel discussion can be viewed here.

The consensus report:  Dietary Reference Intakes for Calcium and Vitamin D

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I caught part of this great  @radiorounds episode (#509) this past Sunday afternoon.  The episode kicked off “Donate Life” month and  focused on the topics of organ donation and the organ shortage crisis.  It aired live on April 3 and will be available on April 5 on their iTunes page!   

The featured guests included:

• Dr. William K. Rundell, Director of Transplant Surgery at Miami Valley Hospital in Dayton, Ohio and Clinical Professor of Surgery at the Wright State Univ. Boonshoft School of Medicine

• Dr. John Donnelly, Asst. Professor of Family Medicine at the Wright State Univ. Boonshoft School of Medicine… and a pancreas transplant recipient

• Dr. Alex Tabarrok, Professor of Economics at George Mason University and co-author of the economics blog Marginal Revolution

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Victoria (@vpmedical), Beyond the Bedside, wrote her own post in response to mine:    Hand Transplant vs. Prosthesis

…. As a life care planning expert in amputation injury and limb loss, I find hand transplantation somewhat disturbing.  I can appreciate the technology and biological advances that have allowed transplantation to occur. …….

One need only to review the case of Mr. Jeff Kepner, a bilateral hand transplant patient, to understand the concerns of such a procedure.  One year after his transplant he still regretted his life changing decision. In his words……….

Be sure to read the comment from Wolf on my post.  It is very insightful.

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Engadget had an article by Christopher Trout yesterday:  Bionic eye closer to human trials with invention of implantable microchip

We've had our eye -- so to speak -- on Bionic Vision Australia (BVA) for sometime, and with the invention of a new implantable microchip it's coming ever closer to getting the bionic eye working on real-deal humans. The tiny chip measures five square millimeters and packs 98 electrodes that stimulate retinal cells to restore vision. ……...

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A lovely essay on the origin of how human hair wigs are sourced, created and distributed by Julia Sherman:  She Goes Covered

Following the global hair trade, from the braid-laden Peruvian highlands to the sheitel machers of Borough Park.

I.     In the fall of 2009, Helene Rosen, her husband, Yoni, and eight of their eleven children moved from Baltimore to Cusco, Peru, to harvest human hair.1 Helene is a forty-four-year-old Orthodox Jew and self-proclaimed “master sheitel designer” who began making wigs fifteen years ago, for ten dollars an hour; her custom hairpieces now sell for up to two thousand. “You can bring me any wig,” she said this past winter, sitting at the table in her spare dining room in Cusco, “and I can tell you how old it is, how much it has been worn, and if it has ever been repaired. I can tell you everything about it.”   ……….

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Arkansas Literary Festival begins this Thursday (April 7-13).  One of the authors this year is the son of a long time friend (from college days, a fellow physics grad who now works for Lockheed Martin in laser research). 

Benjamin Hale is a graduate of the Iowa Writers Workshop, where he received a Provost's Fellowship to complete his novel, which went on to win a Michener-Copernicus Award. He has been a night shift baker, security guard, trompe l'oeil painter, pizza deliverer, cartoonist, illustrator, and technical writer. He grew up in Colorado and now lives in New York. The Evolution of Bruno Littlemore is his first novel.

To visit Benjamin Hale's website, click here

Florida Student Gets Hand Transplant

 Updated 3/2017-- photos and all links (except to my own posts) removed as many are no longer active and it was easier than checking each one.

This is a difficult post for me to write.  As much as I admire the surgeons who are pushing this new advance I found myself bothered by this one.  Why?     That’s what I have been asking myself.  After all, Linda Lu, 21 year old, is a college student from Orlando, Florida is ecstatic about the new hand.

"I've already accepted it as my hand since the day I woke up," Linda Lu said during a Monday press conference at Emory University Hospital in Atlanta, where the surgery took place. "But just looking at it, sometimes I still can't believe that it's there... It kind of feels like magic."

"I'm in information technology," Lu said. "So, my primary goal is to be able to type."

Simple enough goal, isn’t it?   When playing the “what would I give up game” my hands are never given up easily.  I could probably learn to sew with only one hand, but it would be difficult and it would become mostly machine sewing.  I could still blog as I could type with one hand – not as fast, but it would get done. 

I would not be able to do surgery with one hand, but a hand transplant would not give that back to me anyway.  The dexterity would never be good enough.

Linda is reported to have lost her left hand when she was 1 year old.  The amputation was done due to complications from Kawasaki disease.

Still I’m left with this uneasy feeling.  Most people born with only one hand/arm adjust well.  For example, look at the baseball pitcher Jim Abbott. 

This healthy young woman will now be placed on anti-rejection medications for life.  It will make any pregnancies she has high-risk ones.  She will be more susceptible to infections.  Some anti-rejection medications increase the risk of cancers.

Just because we can do a procedure doesn’t mean we always should.  I hope my uneasiness regarding this one is misplaced.  After all, I am getting my information from news articles and not from a discussion with the patient.

Newsprint articles

Florida Student Receives Rare Hand Transplant Surgery, FoxNews.com, March 28, 2011

Valencia student has rare hand transplant at Emory University, LA Times, March 28, 2011 (video as well as print)

Related posts:
Double Hand Transplant on Twitter  (August 26, 2010)
Cost of Hand Transplantation?  (September 22, 2010)
Rejection  (December 1, 2010)
New Technology May Help Prevent Rejection in Hand Transplant Patients (December 13, 2010)

Shout Outs

Updated 3/2017-- photos and all links removed as many are no longer active and it was easier than checking each one.

Dr Mike Sevilla (formerly Dr. Anonymous), Family Medicine Rocks, is the host for this week’s of Grand Rounds! You can read this week’s edition here.

I'm honored to be hosting Grand Rounds for the fourth time. This is not the GR theme today, but I did want to mention that it's Doctor's Day tomorrow in the United States. Doctor's Day was first observed on March 30, 1933. Eudora Brown Almond, wife of Dr. Charles Almond, decided to set aside a day to honor physicians.

The red carnation is commonly used as the symbolic flower for National Doctors Day. In 1990, law was passed designating March 30 as "National Doctors Day." Big shout out to all my physician colleagues out there!  ……

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A very moving post by Richard Sheff, MD on KevinMD.com: Giving the patient and family precious minutes to say goodbye

Dorothy suffered a second heart attack, leaving more of her heart muscle damaged and causing her to slip into congestive heart failure. There was not much we could do to reverse the many blockages in her arteries. Yet she was cheerful, as were her four children.

One morning Mary came to find me. “Dorothy says she isn’t feeling well.” …………….

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HT to @hrana for the link to this HuffPost article by Robert M. Tornambe, M.D: "What Is Beauty? A Plastic Surgeon's Perspective"

Everything has beauty, but not everyone sees it. ~ Confucius

The word "beauty" is the most overused, misunderstood, poorly defined word in the English language. What makes a woman beautiful? The Holy Grail of beauty has never been completely understood. The cliché, "Beauty is in the eye of the beholder," is incorrect in my opinion. Perception is the key. It is "perception of beauty" that is in the eye of the beholder. Each of us, however, has a different perception of beauty. We all have different tastes, likes and dislikes, and this affects our definition and perception of beauty with regard to the American woman. As a plastic surgeon, it is my job to counsel people about this perception of beauty because so many misconceptions exist. ……….

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HT to @helenjaques for sharing this tweet “RT @BMAstudents Self experimenting doctors: Altruistic or self serving? http://bit.ly/fUFIMX”  (free registration required)

…. Rebecca Ghani investigates the long and sometimes bizarre tradition of self-experimenting doctors.

Self experimentation throws up problems around practicality, accuracy, reliability, and ethics. ….. And why do this when there’s an agreed medical and ethical protocol for clinical trials?

But delve a little deeper and …….

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The debate continues on whether organ donors should be paid.  The Baltimore Sun has a pro/con article:  The consequences of a donor kidney market

Should you be paid to part with a kidney?

It's an unseemly question, but it's one that medical professionals have been grappling with as the waiting list for kidneys gets longer, supply of the organs stagnates and other solutions fall short.  …….

Read on for two views on this topic. …….

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New York Times article by Paula Span:  Aging Without Children

…….How childless adults should approach their later years is a question that surfaces with some frequency among readers and commenters here. It’s true, as many attest, that being a parent doesn’t guarantee elder care. But it’s also true that the bulk of America’s old people are, in fact, cared for primarily by relatives: spouses first, then adult children.

“Children are a good insurance policy,” said Merril Silverstein, a prominent gerontologist at the University of Southern California. “In some other countries, that’s why people have children. Here, though it’s less certain, it’s still a pretty good bet.”  ……

It shouldn’t be that way, argued Debra Umberson, a sociologist at the University of Texas at Austin, who has written about childlessness and parenthood: “We shouldn’t have to have kids who work for us for free so we don’t have to go to a nursing home.” ………………

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A really nice instructional post on the Etsy Blog written by julieincharge: How-Tuesday: Make a Quilt Label

As anyone who has ever stitched, admired, or snuggled with a quilt knows, quilting has a history steeped in resourcefulness, storytelling, community, and warmth. In honor of National Quilting Month, which marks its 20th anniversary this year, Amy Milne, the director of the Alliance for American Quilts, has penned a how-to project and a call for the importance of labeling quilts (and artworks of all kinds) for the sake of staking a spot in handmade history and taking pride and authorship in your craft. Do you have a quilt that holds a special spot in your heart or family history? Be sure to share your story in the comments below. ………..

First Full Face Transplant in US

 Updated 3/2017-- photos/videos and all links (except those to my own posts) removed as many are no longer active and it was easier than checking each one.

It continues to amaze me that colleagues are able to do such marvelous work to improve the lives of some.  For Dallas Wiens, 25, the benefits and hope of an improved life outweigh the risks of surgery and rejection (transplant).

He is a construction worker from Ft. Worth, TX who suffered severe burns to his head two and a half years ago when the boom lift he was operating drifted into a nearby power line. The nearly fatal accident left him in a coma for three months.

Related posts
Face Transplantation – First in the US Done (December 18, 2008)
Appearance Is A Function of the Face (December 30, 2009)
More on Facial Transplantation (March 1, 2010)
First Full Face Transplant Done!  (July 12, 2010)
Facial Prosthetics Restores Face (August 5, 2010)
First Full Face Transplant Done! (July 12, 2010)
Facing Monday  (January 24, 2011)

Facing Monday

Updated 3/2017-- photos and all links removed as many are no longer active and it was easier than checking each one.

Last Monday was reported to be the saddest day of this year.   So to help you and I face Monday and the beginning of a new week, in case you missed these stories…..

Roger Ebert has written in his Chicago Sun Times blog of how he will once again be “Leading with my chin.” 

………..That was the beginning of a two-year process that has now resulted with my coming into possession of a silicone prosthesis. Dr. Reisberg brought in David Rotter, also from the University of Illinois, and he involved Julie Jordan Brown, a Milwaukee artist and anaplastologist. Working from molds, they created a prototype prosthesis and sculpted it carefully to more closely resemble what had been there before. This device would fit over my lower face and neck and, colored to match my skin, would pass muster at a certain distance……….

He will wear the facial prosthetic on his new show set to debuted Friday January 21, 2011:   Ebert Presents at the Movies.  He speaks using his voice through his laptop.

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Last week, we heard the voice of a woman who is only the second person to receive a larynx transplant.   The 52 yo California woman’s surgery was done by a team of surgeons at UC Davis Medical Center.

From this article by Aaron Saenz: Woman Speaks With Her Own Voice After Larynx Transplant (video) comes the reminder that just last year a 10 year old boy had a new trachea made from his own stem cells.

So is this surgery simply a fluke? …... According to Paolo Macchiarini, one of the surgeons involved, “Not only is it highly relevant for future transplants, it offers us insights that may one day lead to using stem cells to repair the voicebox and surrounding areas in the throat.”

When it comes to stem cells and the throat, Macchiarini knows what he’s talking about. Last year he was the leader of a team that grew a new trachea in a 10 year old boy using the child’s own stem cells. As he stated in regards to the Jensen case, “Being able to restore nerves and reconnect blood vessels in and around the larynx and trachea, and have it all work, was a real test.” Perhaps this most recent operation will lead to further remarkable work from Macchiarini in the near future.

 

Related posts

First Full Face Transplant Done! (July 12, 2010)

Facial Prosthetics Restores Face (August 5, 2010)

Double Hand Transplant on Twitter (August 26, 2010)

 

 

REFERENCE

Laryngeal Transplantation and 40-Month Follow-up; Marshall Strome, M.D., Jeannine Stein, M.D., Ramon Esclamado, M.D., Douglas Hicks, Ph.D., Robert R. Lorenz, M.D., William Braun, M.D., Randall Yetman, M.D., Isaac Eliachar, M.D., and James Mayes, M.D.; N Engl J Med 2001; 344:1676-1679

Shout Outs

Updated 3/2017-- photos and all links (except to my own posts) removed as many are no longer active and it was easier than checking each one.

Chronic Babe blog is the host for this week’s Grand Rounds! You can read this week’s edition here.

It's the end of the year, and while most folks are resolving to lose a few pounds or see their nieces more in the new year, our bloggers are trying to make sure their patients are healthier...that we learn to use robots to teach patients to manage pain...that health care legislation works well for millions...we are an ambitious crew. Editrix Jenni Prokopy is proud to present Vol. 7, No. 13 of Grand Rounds, the last edition of 2010, chock full of fun and compelling new year's health care resolutions. Enjoy!……….

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Dr. Marya Zilberberg, Healthcare,etc., does a fantastic job of explaining “Why medical testing is never a simple decision.”

………..The case illustrates the pitfalls of getting a seemingly innocuous test for what appears to be a humanistic reason -- patient reassurance. Yet, look at the tsunami of harm that followed this one decision. But what is done is done. The big question is, can cases like this be prevented in the future? And if so, how? I will submit to you that Bayesian approaches to testing can and should reduce such complications. Here is how.
First, what is Bayesian thinking? ……….

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I am an advocate of organ donation, but when using living donors everything must be done to do it safely. It is not a good thing for a healthy person to end up unhealthy, disabled, or dead when donating to help a friend or loved one. We are reminded of this in the news article by Elizabeth Cohen: When liver donations go wrong

…….Four living liver donors have died in the United States since 1999, according to the United Network for Organ Sharing, including Arnold and another patient who died earlier this year at the Lahey Clinic in Massachusetts. About 38% of liver donors have some kind of complication, according to the Adult-to-Adult Living Donor Liver Transplantation Cohort Study, a project to disseminate information about living donor liver transplants. Some experts think some of these deaths and complications could have been prevented if there was a change the way hospitals exchanged information about complications with organ donations. ……….

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Via Kerri, Six Until Me: What NOT to Say to the Parent of a Kid with Diabetes.
 

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From twitter:  RT @tbtam RT @THCBstaff Using An App to Confront Your Metastatic Melanoma http://bit.ly/hKHPFt

The Health Care Blog post,  Using An App to Confront Your Metastatic Melanoma, is written by George D. Lundberg, MD.

If you or anyone else you know has had a malignant melanoma, you and that other person, and your respective physicians, should click http://therapy.collabrx.com to access the Targeted Therapy Finder--Melanoma (ttf-melanoma). It is free and does not require registration.  …..

The app is based upon the science of the original Melanoma Molecular Disease Model (MMDM) in Cancer Commons built by David Fisher and Keith Flaherty of Harvard Medical School and Smruti Vidwans and colleagues on our staff.   …….

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The Alliance for American Quilts is hosting another quilt contest. This is the 5th annual contest. I entered the past two years. You can see my finished quilts here and here.

This year's theme, "Alliances: People, Patterns, Passion," is as open-ended as the last and celebrates cooperative relationships that work towards a common goal.

Important: This year's deadline is much earlier: March 7, 2011. The reason: all entries will be exhibited at the American Quilter's Society show in Paducah, April 27-30. Our grand prize winner this year will have their choice of any Handi Quilter quilting machine!! Visit the "Alliances" homepage for full details and the downloadable entry form.

New Technology May Help Prevent Rejection in Hand Transplant Patients

Updated 3/2017-- all links (except to my own posts) removed as many are no longer active and it was easier than checking each one.

Previously I posted on rejection in hand transplant patients when it was reported double hand transplant on patient Rich Edwards of Oklahoma might “lose the fingertips on his right thumb and pinkie because his body started to reject the new limbs.”

Jewish Hospital Hand Care Center and the Christine M Kleinert Institute have released news on a new medical device which may allow detection of rejection at an earlier stage.  Early detection could then improve treatment and perhaps prevent limb loss as with the team’s 4th patient Dave Armstrong who had his transplanted hand amputated in April 2009 due to rejection.

I first read about this new device, an ultrasound biomicroscopy device, in Wave3.com’s December 6, 2010 article: New technology helping keep transplanted hands attached.  Today I found the December 9, 2010 press release from the team (bold highlight is mine).

Despite recent setbacks, Dr. Richard “Rich” Edwards, the nation’s third double hand transplant recipient, continues to progress under the care of Kleinert Kutz and Associates hand surgeons at Jewish Hospital in Louisville, Ky.

Dr. Edwards experienced complications in mid-November when signs of rejection caused him to be hospitalized for several days.  Michael Marvin, M.D., chief of transplantation, Jewish Hospital/University of Louisville, and Rosemary Ouseph, MD, director of kidney transplantation at University of Louisville, who have overseen Edwards’ post-surgical immunosuppressant drug regimen, added steroid shots to Dr. Edwards’ routine to counteract the rejection.

The complication, which resulted in a loss of blood flow has caused the tip of Dr. Edwards  right pinkie to turn black. He had already had the tip of the thumb turn black due to a loss of blood flow shortly after the transplant. Unfortunately, those fingertips may eventually need to be removed.

Dr. Warren Breidenbach, partner at Kleinert Kutz  and Associates and assistant clinical professor of surgery at the University of Louisville said, “ The left hand is doing great and has good function. I call the right hand the “miracle hand” because of blood flow issues early on. The good news about the right hand is it has re-established blood flow and his hand function has almost caught up with the left hand.  The bad news is the right hand does not have the same volume of blood flow as the left, but it does have enough to survive.  The right hand remains a problem hand with an unknown future.  We are in uncharted waters with the right hand.”

Breidenbach added, “All hand transplant patients have the risk of loosing a hand at any time. In addition, all patients go through a rejection episode in the first six months. Dr. Edwards was around three months out from the transplant.  He had swelling which compromised the blood flow in mid November.“

Dr. Edwards remains closely monitored by the team at the Christine M. Kleinert Institute for Hand and Microsurgery (CMKI), including Christina Kaufman, PhD., executive director of CMKI and assistant professor at the University of Louisville.  Dr. Kaufman uses ultrasound biomicroscopy (UBM), a new technology that utilizes very high frequency ultrasound (20-70 MHz) to noninvasively monitor blood flow, vessels, arteries and artery intima, or thickness, which is where signs of potential rejection often first appear.

The device, which has not yet been approved for clinical use, was purchased with funds from the Department of Defense in January 2010.  Each of the previous hand transplant patients are also being monitored using UBM. Currently, Dr. Edwards is being tested every two weeks.

“Using this new technology we have done a great deal of investigation,” said Kaufman.  “There is a push to reduce the immunosuppressant medications, but we do not want to risk the loss of the hand.  With this machine, we are hoping to be able to reduce the drug regimen with maximum safety.  We are making advances and we’re getting better. That’s what research is about.”

Dr. Edwards continues therapy on his hands five-days-a-week with the therapists at the Christine M. Kleinert for four-hours-a-day. His wife, Cindy Edwards, assists him with additional therapy on his own several times each day, seven-days-a-week. His hands have already helped him regain independence in his daily activities.  He can brush his teeth, comb his hair, take his shirt on and off and feed himself throughout an entire meal – all activities that he was unable to do unaided before the transplant.  He hopes to be able to return to his home in Edmond, Oklahoma for the holidays.

“Every one to two days, I can see a change in my hands,” said Dr. Edwards.  “They are the best Christmas gift that I have ever been given.”

“These are minute changes, but when you work with his hands all day every day, those changes are encouraging,” said Cindy Edwards.  “He’s come a long way in less than four months.”

Dr. Edwards worked as a chiropractor before losing both hands when his truck caught fire on February 11, 2006.  Unable to escape the burning vehicle, he was severely burned on his face, back, arms and hands, leaving very little tissue in both hands.

Dr. Breidenbach led the team of surgeons from Kleinert Kutz, Christine M. Kleinert Institute and the University of Louisville who performed the initial 17 ½ hour surgical procedure August 24-25, 2010, at the Jewish Hospital Hand Care Center.  He continues to manage Dr. Edwards’ follow-up care.

The Composite Tissue Allotransplantation program is a partnership of physicians, researchers and healthcare providers at the Jewish Hospital Hand Care Center, Kleinert Kutz and Associates, the Christine M. Kleinert Institute and the University of Louisville. The group developed the pioneering hand transplant procedure and has performed five other hand transplants since 1999.  Kentucky Organ Donor Affiliates coordinated the hand donation for the team’s hand transplant procedures.

The hand transplant is sponsored by the Department of Defense, Office of Naval Research and Office of Army Research to further research in the composite tissue allotransplantation program.

Patient and physician information, photography and video are available at www.handtransplant.com and http://www.jhsmh.org/hand. 

Rejection

Updated 3/2017-- photos and all links (except to my own posts) removed as many are no longer active and it was easier than checking each one.

Doctor Richard Edwards, a chiropractor from Oklahoma and the nation's third double hand transplant, was recently in the news again.  This time it a report that he “may lose the fingertips on his right thumb and pinkie because his body started to reject the new limbs.”

Dr. Edwards’ surgery was live tweeted when it was done in August by Louisville surgeons at The Jewish Hospital Hand Care Center.

Jeff Kepner, the first patient in the United States to receive two hands simultaneously, experienced an episode of rejection which was dealt with successfully.

Rejection is never a good thing in a transplant patient not matter which organ or part transplant.  Even though I applaud the advances being made, we must always consider the cost of the proposed treatment and ask if there a better option for this individual?

Hand or arm transplantation is not possible for all.  A missing arm can bring (social) rejection to the individual as it did for this woman, Tammy Chinander (photo credit, shown with her daughter Krystal).  [H/T from @vpmedical]

The Rudd native lost her arm at the age of 2 when she caught it in a wringer washing machine. The arm was amputated above the elbow.

For years, she managed with an arm with a hook, but at the age of 31, she decided she was through with it.

"I got tired of it hanging there," she said. "It wasn't working. It looked bad. My son was scared of it."

 

The best choice for her turned out to be a German-manufactured Otto Bock DynamicArm, typically $75,000 to $100,000 in cost which will be paid by her insurance.

Chinander's goal is to get the new arm to work as well as her other arm. Right now, it takes serious concentration to use it.

"I'm going through the second part of my life learning to do everything two-handed," she joked.

…..Krystal could not hold back the tears as she described what it is like for them.

"Getting that first two-armed hug from your mom that you see all the other kids getting is really wonderful," she said.

 

 

REFERENCES

Hand Transplant Fact Sheet: History and Evolution of Hand Transplantation;  UPMC/University of Pittsburgh Schools of the Health Sciences 

Transplantation — A Medical Miracle of the 20th Century; Peter J. Morris, F.R.S.; N Engl J Med 2004; 351:2678-2680December 23, 2004

Immunosuppression and Rejection in Human Hand Transplantation; Schneeberger S, Gorantla VS, Hautz T, Pulikkottil B, Margreiter R, Lee WP;  Transplant Proc. 2009 Mar;41(2):472-5.

Cost of Hand Transplantation?

 Updated 3/2017-- all links (except to my own posts) removed as many are no longer active and it was easier than checking each one.

The recent double hand transplant and catching up on my journal reading has prompted me to look into the cost of hand transplantation. My personal identity seems to me to be tied up in my hands. I am a surgeon. I cook for my husband. I am a quilter.

I have at times tried to imagine loosing a finger or a hand. It difficult to the point of almost being unimaginable for me. Which hand would I give up? Which digit?

I am so right handed, I find it difficult to brush my teeth using my left hand. Yes, I could learn in time. Same with using a pen. Even my limited use of my left arm when I had olecranon bursitis brings my dependency on my hands/arms into sharp focus. It was humbling.

The PRS article (first reference) in assigning utility surveyed participants asking them “to imagine as vividly as possible that they had experienced an amputation of the dominant hand or bilateral hand amputations.”

For example, our survey asks the respondent to choose between living for 40 years with a prosthetic hand and living for x years with a healthy hand. The value of x is varied until the respondent feels that the choices are equivalent. If the respondent judges that living for 40 years with a prosthetic hand is equivalent to living for 20 years with a healthy hand, the utility of living with a prosthetic hand is calculated as 20/40, or 0.50.

I have yet to decide what my answer would be. The article survey of 100 second-year, third-year, and fourth-year University of Michigan Medical School students determined utility as follows:

Transplantation with minor complications (unilateral = 0.78; bilateral = 0.73)

Transplantation with major complications (unilateral = 0.59; bilateral = 0.53)

Prosthetic device use (unilateral 0.75; bilateral 0.63)

Emotionally most would agree that hand transplantation is a worthy goal. Physically, it is possible. The outcome is not always as good as envisioned. Never is the transplanted hand as functional as a non-injured hand. Never.

The function of a transplanted hand has been found to be similar to a replanted hand.

to put it in the words of one physician from the Louisville team that performed the first U.S. hand transplant, the patient will likely “have difficulty with buttons, perhaps not be able to pick up a dime.”

Gerald Fisher, the second of the Louisville recipients, returned to work hanging gutters just two months after his operation
According to the Lyon team, the world’s first double-hand transplant recipient is able to shave and take care of other personal hygiene tasks that he was unable to do before his transplant

With much physical/occupation therapy afterwards, the transplanted hand can be functional. It’s not likely I would be able to pick up a needle to sew/hand quilt again, but I would be able to brush my hair and teeth.

The ethics of a non-life threatening diagnosis (loss of one or both hands) being treated with a procedure that requires immunosuppressive drugs for life is still being debated and should be. From the PRS article (first reference)

The toxicity of immunosuppressive medication, however, brings about an ethical dilemma. In solid organ transplantation, 40 percent of posttransplant deaths were attributed to infection; transplant recipients have a seven-fold 5-year risk over the general population of developing malignancies.

This all brings us back to the actual costs of hand transplantation which is very difficult to determine though Dr. Oda and colleagues have done a good job in attempting to do so. I think they may have underestimated the costs.

Lifetime costs for single hand transplantation average $528,293, whereas costs for double hand transplantation average $529,315.

Total costs of prosthesis adoption for unilateral and bilateral amputation are $20,653 and $41,305, respectively.

The mean surgical cost, including preoperative evaluation, hospitalization, and physician fee, are $13,796 for single hand transplantation and $14,608 for double hand transplantation.

The cost of immunosuppressive therapy for 40 years, including drugs and clinic visit, is $433,283 ($362,894-503,672).

The cost of productivity loss for hand transplantation and prosthetic adaptation are $42,265 and $9753, respectively.

Oda and colleagues doubled the traditionally cost-effectiveness threshold of $50,000/QALY (employed based on the acceptance of kidney transplantation) to $100,000 for their analysis.

For unilateral hand amputation, prosthetic use was favored over hand transplantation (30.00 QALYs versus 28.81 QALYs; p = 0.03).

Double hand transplantation was favored over the use of prostheses (26.73 QALYs versus 25.20 QALYs; p = 0.01). The incremental cost-utility ratio of double transplantation when compared with prostheses was $381,961/QALY, exceeding the accepted cost-effectiveness threshold of $100,000/QALY.

As pointed out by Dr. Concannon in the discussion of Oda’s article, I and others can muse all we want but it will most likely ultimately be out of our hands.

Ultimately, while the costs and worthiness of this technique may be debated in scientific journals, it will certainly not be decided in them. There are industry and governmental agencies with far sharper pencils than we have that will look very closely at the cost-benefit ratio before deciding whether this will be an acceptably “covered” procedure for their respective constituents. Perhaps the biggest hurdle in the implementation of limb transplantation will involve mastery not of the immune system but of actuarial tables.

REFERENCES

An Economic Analysis of Hand Transplantation in the United States; Chung, Kevin C.; Oda, Takashi; Saddawi-Konefka, Daniel; Shauver, Melissa J.; Plastic & Reconstructive Surgery. 125(2):589-598, February 2010.; doi: 10.1097/PRS.0b013e3181c82eb6

Discussion: An Economic Analysis of Hand Transplantation in the United States; Concannon, Matthew J.; Plastic & Reconstructive Surgery. 125(2):599-600, February 2010.; doi: 10.1097/PRS.0b013e3181c831e5

Hand transplantation not cost-effective; AAOS Now, January 2010 Issue; Peter Pollack

Hand Transplantation; Brown University Biomed Course Info (2001); accessed September 15, 2010

Double Hand Transplant on Twitter

Updated 3/2017 -- photos and all links (except to my own posts) removed as many no longer active.

 

Louisville surgeons at The Jewish Hospital Hand Care Center recently performed the 3rd double hand transplant done in the United States.  It is the first to be live tweeted.

The procedure began around 7 p.m. on Tuesday, August 24, and finished late Wednesday afternoon, August 25.  Lead surgeon, Warren C. Breidenbach, M.D, with Kleinert Kutz & Associates, and his team of surgeons focused on the surgery while senior hand fellow Christiana Savvidou, M.D. used a laptop just outside the operating room to document the surgery as it takes place.

This bilateral transplant is the third double hand transplant to be done in the United States.  The first two double hand transplants were done at the University of Pittsburgh Medical Center, the first in May 2009 and the second in February 2010.  Louisville doctors performed the nation's first five single hand transplants.

Savvidou used the tweeter account @jewishhospital (www.twitter.com/jewishhospital) and the hashtag #handtx.

Here are some of the tweets which are a good representation of how the surgery progresses and how much time it takes.

jewishhospital

1st tweet ~ 7 pm ET, shortly before start of surgery

Want to know how a hand transplant is done? This is your chance- we are live tweeting a double hand transplant 2day starting @ 7pm! #handtx

approx 2 hrs later

The recipient’s right hand is fully prepped and awaiting the transplantation of the donor limb. #handtx

Education of terms: “prepped” = hand is being scraped & sterile dressing. “Started” = skin has been cut and surgery begun. #handtx

approx 4 hrs after start

Continuing donor and recipient dissection tendon identification and nerve identification in both recipient hands. Going smoothly. #handtx

approx 5 hrs after start

Removal of non-functioning hand tissue in preparation for donor limb attachment. #handtx

Both donor hands are on the table. Preparing for bone work - bone fixation at forearm of right recipient wrist. #handtx

@stacyluvsyah The bones are reattached with plates and screws similar to how a broken bone may be repaired. #handtx

approx 6 hrs after start

Bone fixation completed successfully in both hands. #handtx

Surgeons are now preparing the arteries. This will be the most important part of the operation. #handtx

approx 7 hrs after start

The connecting of the donor and recipient vessels (arteries and veins) is progressing very well in both hands. #handtx

approx 8 hrs after start

The hand replantation is progressing well. Surgeons are joining the tendons. #handtx

approx 10 hrs after start

Both hands are now vascularized and we are approximately 3/4 of the way complete. All is progressing well. #handtx

approx 11 hrs after start

Tendon suturing nearing completion. Nerve repair to follow. This includes suturing nerves of each finger from donor to recipient. #handtx

approx 12 hrs after start

Due to the number of nerves and tendons, this current stage could take a while…update coming when we near completion of this stage #handtx

approx 13 hrs after start

Nerve repairs on the left hand are now complete. #handtx

approx 14 hrs after start

The left hand is currently approximately 2/3 closed and final work on veins is occurring. #handtx

approx 16 hrs after start

Finishing right hand nerve repair. Due to new technique, this patient should have better feeling & motion than previous recipients #handtx

The left hand is currently being sewn shut. #handtx

approx 17 hrs after start

The left hand is now fully wrapped in surgical gauze and cotton padding. #handtx

approx 18 hrs after start

Surgeons are starting to close up the right hand #handtx

approx 19 hrs after start

Extra tissue is needed to finish closing the right hand. A skin graft is being taken from the patient's leg for this. #handtx

almost 20 hrs after start

Skin graft on right hand finished and hand is completely closed. Starting cleansing and bandaging. #handtx

(photo credit)

 

While we embrace the new ways to educate the public, Dr. Wes reminds us of  The Risks of Hospitals Live-Tweeting Surgeries.

For more information on hand transplant surgeon visit the teams’ website: www.handtransplant.com. 

Shout Outs

Updated 3/2017 -- photos and all links (except to my own posts) removed as many no longer active.

Mike, LITFL is the host for this week’s “killer” Grand Rounds.  You can read this week’s edition here.

It is with great honor that the Life in the Fast Lane team and the Utopian College of Emergency for Medicine host this weeks Grand Rounds Vol. 6 No. 45 on August 3rd 2010.

The theme for this edition is ‘Killer Posts‘. We asked the MedBlogosphere to trawl their blog archive and dive deep into the soul of their writing to find their best; most inspirational; clever; witty; well-researched; head-turning; gut-wrenching; magnificent; glorious requiem of a post…and they did! Furthermore, each author has chosen their preferred deadly Aussie critter, and we have coupled each blogger accordingly…

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In case you haven’t heard about the amazing rescue of @leighfazzina with help from her twitter friends last Tuesday, then you need to read her story in her own words:  Twitter Leads Rescue Efforts Fazzina Bike Crash

Twitter. Never underestimate its viral engaging power. Ever. Please, just don’t ever do it.

The power Twitter holds for instant viral communication is utterly amazing, and it helped me get rescued last night after I suffered a mountain bike crash in deep evening-lit woods that I was unfamiliar with.

Yes – that’s right. Thanks to the power of Twitter, I was rescued last night by the The Town of Farmington Fire Department (Connecticut) after suffering a serious mountain bike crash where I ended up off the beaten path alone in a wooded forest that was totally foreign to me. ……………

Listen to Dr. Anonymous’ interview of @DrJonathan who was involved in the rescue as one of Leigh’s twitter followers:  Doctor Anonymous: Dr. A Show 175: Twitter Saves Life.

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New York Times Health segment Patient Voices featured patients with scleroderma this past week:  Patient Voices: Scleroderma

A disease that causes widespread hardening of connective tissue, scleroderma can affect people in a host of different ways. From a stiffening of the skin to digestive and breathing difficulties, scleroderma’s impact can be varied and far-reaching. Here, six men and women speak about how scleroderma has affected them. (Join the discussion on the Well blog.)

One of the six is Erion Moore diagnosed after he noticed increasing problems playing basketball.  (photo credit)

 

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Dr Charles is hosting the first annual 2010 Charles Prize for Poetry.  Have you submitted one yet?

Open to everyone (patients, doctors, nurses, students, etc.). Limit 1 or 2 entries per person.

Poems should be related to experiencing, practicing, or reflecting upon a medical, scientific, or health-related matter……

Contest closes August 31st.

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Medical Quack has written  UCLA Hand Transplant Program Announced – Research Study Program And Afflicted Patients Can Apply

Hand transplantation is still experimental. The UCLA Hand Transplantation Program is a research study that has been approved by UCLA's Institutional Review Board. …..

Eligibility Criteria for the UCLA Hand Transplantation Program
18-to-60 years of age
Good general health
Amputation not due to birth defect or cancer
Amputation of limb at the wrist or forearm
No serious infections such as hepatitis B or C or HIV

Patients who meet the basic eligibility requirements and wish to be considered for the UCLA Hand Transplantation Program should contact Dr. Kodi Azari, the Surgical Director of the Hand Transplantation Program at (310) 825-1745, for an initial evaluation.

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Yesterday, there was a very nice episode of the Diane Rehm show on Raising Awareness About Bladder Cancer

Bladder cancer is the fifth most commonly diagnosed cancer in the U.S. and one of the most expensive to treat. Each year, more than 60,000 new cases are discovered and 14,000 Americans die from the disease. Guest host Susan Page and guests look at efforts to spread the word about bladder cancer.

Guests

Sandra Steingraber:  biologist, author and bladder cancer survivor. She wrote "Living Downstream: An Ecologist's Personal Investigation of Cancer and the Environment."

Dr. Mark Schoenberg:  director of urologic oncology, The James Buchanan Brady Urological Institute at The Johns Hopkins Medical Institutions.

Diane Zipursky Quale:  president and co-founder, Bladder Cancer Advocacy Network.

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One of our fellow physician bloggers is in Uganda on a medical mission trip.  She has met a young man with elephantitis who needs help:

I met a 25 year old man named Jaffeer today. His right leg is diseased with elephantitis. ……. he is in constant pain 24/7.
He needs hospitalization in Kampala. He needs amputation. He needs a prosthetic leg.
This all requires money.
If you have always wanted to help, but didn't know how, now is the chance. …….

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Dr Anonymous’ BTR show will be Pre-Med Student Erin Breedlove.  

Upcoming shows (9pm ET)

8/12: Pre-Med Student @InsaneMo
8/19: 4th Year Med Student @DrJonathan
8/26: Dr. A Show 3rd Anniversary

Shout Outs

Updated 3/2017 -- photos and all links (except to my own posts) removed as many no longer active. 

Bongi, other things amanzi, is the host for this week’s Grand Rounds.  You can read this week’s edition here.

it's not just the soccer world cup that is on south african shores but the great grand rounds, something that some would say is far more important than the world cup (ok only one guy would actually say that and he is in a psychiatric institution in outer mongolia) is also presently hosted in south africa!!! proudly south african!!!

but time to see what the bloggers have dished up for us this week.

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Kim, Emergiblog, is the host of the latest edition of Change of Shift (Vol 5, No 1) which marks the beginning of the 5th year!   You can find the schedule and the COS archives at Emergiblog. (photo credit)

Welcome to the Change of Shift anniversary edition!
Today marks the beginning of Change of Shift’s fifth year.
Thanks to everyone who responded with suggestions for our carnival! I’ll be compiling those thoughts into a future post (let’s just say link lists are out…).
Many thanks to those who contributed! This week, I’ve added a few new-to-me nursing blogs I’ve discovered along with favorite CoS regulars………

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NPR has a wonderful series called StoryCorps were family members interview one another.  In this one, two young children interview their father about his bionic hand:  For Kids, Dad's Bionic Hand Recalls 'Star Wars'

In 2007, Eric Jones survived a bout with cancer, but complications from his treatment led doctors to amputate his right hand. He then became one of the first Americans to receive a bionic hand. He recently spoke with his son Alex, 7, and daughter, Lanie, 10, about his recovery.
"How did you get your bionic hand, Dad?" Lanie asks.
"On the Internet," her father says.
"Did you just go to Google and look up, um ... 'bionic hand?' " she asks…..

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Interesting article on lack of remuneration to organ donations via a tweet by @txmed -- “The organ donor—alone among all the participants in the world of transplantation—receives no benefit http://bit.ly/cWImng”:  Our Deeply Unethical National Organ Policy (bold emphasis is mine)

………Everyone involved in the organ transplantation process benefits handsomely, except the donor. Organ transplantation provides a wonderful example of life-saving science and technology deployed in serving mankind. It is also a thriving industry. The entire transplant team, including the surgeons, nurses, technicians, pharmacists, nephrologists, and other specialists are well-paid for their respective roles in providing organ transplant service. The medical centers at which transplants are performed are also handsomely compensated. The procedure feeds revenue into virtually every facet of the hospital. It occupies rooms, keeps labs busy, requires numerous expensive tests, and staff at all levels benefit. The pharmaceutical industry certainly benefits, as transplant patients remain on various expensive drugs to protect their new organ for the rest of their lives. Then, of course, there is the recipient who is, perhaps, compensated best of all. He or she gets his or her life back. Only the donor, who gives the most and without whom the entire process would grind to an abrupt halt, is required to forego any material recompense for his or her service.………………..

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TBTAM has been interviewed by Womens Health.gov

I was privileged to be the featured interview this month at the Spotlight on Women's Health series at Womenshealth.gov, the website of the Office of Women's Health. Thanks to the editors for their thoughtful questions and  for the opportunity to speak to women about HPV, healthy living and, of course, cooking!

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The Alliance for American Quilts received 115 quilts for it’s “New from Old Quilt Contest Contest.”  You can see all the quilts here.  My entry was “Label Me.”  The winner was this lovely quilt called “Metal Measures” by Jamie Fingal of California.

Measuring tape fabric, wool felt, old zippers, embroidery thread. Fabric was Mistyfused onto zippers and handsewn into place. Zigzag on domestic machine to felt.

The quintessential American design made into a modern day log cabin that is heavy on the metal.

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Dr Anonymous’ BTR show will be on summer break until late August.

Upcoming shows (9pm ET)

Jul-Aug: Summer Break
8/26: Dr. A Show 3rd Anniversary

First Full Face Transplant Done!

Updated 3/2017 -- all links (except to my own posts) removed as many no longer active. 

French surgeons at the the Creteil Henri-Mondor Hospital in the Paris suburbs performed the first successful full face transplant which included the lacrimal system (eyelids and tear ducts) last month on June 26.

The team was lead by head surgeon Laurent Lantieri who has already performed four other partial or nearly-complete face transplants including the one two years ago on Pascal Coler, 24, who needed a new face after suffering from Von Recklinghausen's disease — known as the "Elephant Man" condition.

This landmark surgery was done on a patient who is identified only as “Jerome,” a 35 year old man a face-disfiguring genetic disorder.  No sources report which genetic disease Jerome has, but it is most likely neurofibromatosis.

Jerome is reported to be doing well.  Lantieri is reported to have said, "My patient is doing well. He is walking, eating, talking. His beard has started to grow back on his new face."

A face transplant involves the removal of the entire face from a corpse, including mouth and eyelids, and grafting it onto the patient. Nerves and blood vessels are connected under a microscope.  Like other transplant procedures, the patient remains at risk of rejecting the transplanted tissue.

Neurofibromatosis is an autosomal dominant disease, which  means that an individual has reached a 50% risk of transmission to their children.  It affects the brain, spinal cord, nerves, skin, and other systems in the body.

There are two types of neurofibromatosis, NF1 and NF2. NF1 is more common, occurring in 1 of every 4,000 births and affecting an estimated 100,000 Americans.  It is also known as von Recklinghausen disease.

NF2 is characterized by the presence of bilateral acoustic neurofibroma-like tumors and is rarer, seen in 1 in 50,000 births. People with NF2 usually develop benign tumors on the nerves in their ears, causing hearing loss, eventual deafness, and problems with balance.

Neurofibromatosis is defined by tumors, called neurofibromas, that grow along nerves in the body, or on or under the skin.  Neurofibromas often first appear in childhood, especially during puberty. Many neurofibromas can be removed.  Although usually benign (noncancerous), an estimated 3%-5% become cancerous.

References
Daily Telegraph
eMedicine:  Neurofibromatosis
National Institute of Neurological Disorders and Stroke

More on Facial Transplantation

Updated 3/2017 -- all links (except to my own posts) removed as many no longer active. and it was easier than checking each one.

There are two related articles from Plastic Surgery Practice by Amy Di Leo who interviewed Daniel Alam, MD on the topic of facial transplantation. Dr. Alam was the primary Microvascular surgeon of the Cleveland Clinic team that performed the 22-hour face transplant procedure. I recommend both to you.

Daniel Alam, MD, on Facial Transplantation: A step-by-step discussion of the historic near-total face transplant in the United States by Amy Di Leo (January 2010)

In Part One of a two-part series of articles, Alam reviews the events that led up to the surgery, including a discussion of donor selection and preparing the patient emotionally for the procedure.

Daniel Alam, MD on Facial Transplantation Recovery and Ethics Issues by Amy Di Leo (February 2010)

Alam: There is a lot of additional recovery for a face transplant patient. That is why it is important for a patient to be local because all the people on the care team need to see her. It wouldn’t make sense for a patient to come to us from Germany for an operation like this. Connie lives about 100 miles away, and she comes for postsurgical visits at least once a month.

Related posts
Face Transplantation – First in the US Done (December 18, 2008)
Cleveland Clinic’s Connie Culp (May 6, 2009)
The Technical and Anatomical Aspects of the World's First Near-Total Human Face and Maxilla Transplant—an Article Review (December 7, 2009)

Appearance Is A Function of the Face

Updated 3/2017-- all links (except to my own posts) removed as many no longer active. and it was easier than checking each one.

I noticed this article title on MDLinx, then went to the Journal of Plastic and Reconstruction website to read the full article.  The abstract is free to read, the full article requires a subscription.

The study was prompted by the authors noticing third party insurers increasingly deny coverage to patients with post traumatic and congenital facial deformities.  This denial is often cited as due to the deformities not being seen as "functional" problems.  The authors cite the recent facial transplants patients as having demonstrated  that the severely deformed are willing to undergo potentially life-threatening surgery and extended chemotherapy in an attempt in look normal.

The authors also noted that very little research exists which objectively documents appearance as a primary “function” of the face.  To this end, they designed their study to “establish a population-based definition of the functions of the human face, rank importance of the face among various anatomic areas, and determine the risk value the average person places on a normal appearance.” 

Their method involved using  210 voluntary adult subjects in three states aged 18 to 75 years who then completed study questionnaires.  Quota sampling technique was used to select the subjects.  The study questionnaires of demography and bias were done using Gamble Chance of Death Questionnaire and Rosenberg Self-esteem Scale.

Their results:

Subjects ranked appearance as number 5 above expression (number 6), and smell was least important.

Subjects ranked the face as the most important body part to restore after an injury followed by the hand, leg, arm, knee and breast.

Chewing was regarded by most subjects (88%) to be a basic function of the face with over half of subjects (57%) rating appearance as a basic function, and 43% of respondents rating beauty.

68% disagreed with the statement  “Normal facial appearance is not important to be a normal functioning member of society.”

17% of subjects agreed with the statement “Normal facial appearance is irrelevant to being a normal functioning member of American Society”.

A large majority of subjects (72%) determined that surgery to normalize the appearance of facial scars from an accident was functional, as compared to those subjects who thought it was non-functional or not necessary (28%).

Most subjects (79%) reported that surgery to normalize the appearance of facial birth defects was functional, while 21% reported that it was not necessary or non functional; and 72% of the respondents agreed that surgery to normalize the appearance of facial scars from an infection was functional.

The highest ranking of agreement regarding surgery was to normalize the appearance of facial nerve injury; 90% of subjects agreed it was functional while only 10% of subjects agreed it was non-functional.

The authors call this a large sampling, but I don’t feel that 210 subjects is a large sampling.  I would like to see this study repeated with minimally 10 times the number of subjects.  If they want to change insurance policy, I think bigger numbers will be needed. 

REFERENCE
Appearance Is A Function of the Face; Plastic and Reconstructive Surgery: POST ACCEPTANCE, 1 December 2009; Borah, Gregory L. MD, FACS; Rankin, Marlene K. PhD; doi:10.1097/PRS.0b013e3181cb613d

 

Related posts
Face Transplantation – First in the US Done (December 18, 2008)
Cleveland Clinic’s Connie Culp (May 6, 2009)
The Technical and Anatomical Aspects of the World's First Near-Total Human Face and Maxilla Transplant—an Article Review (December 7, 2009)

Shout Outs

 Updated 3/2017-- photos and all links (except to my own posts) removed as many no longer active. and it was easier than checking each one.

Dr. Ottematic is this week's host of Grand Rounds. You can read this week’s edition here (photo credit).

The end of the year is a time of reflection. We look forward to the years to come and look backwards, pondering our triumphs and tragedies. And, if you are anything like me, you might also look behind the dryer for that missing sock.

In late December, the tradition is also to formalize our best intentions for the future, even if we know the process is futile. Though considered nearly a pointless exercise, with failure resulting in an even worse state than before we started, we make these resolutions annually. So, onto the blogs, grouped according to some of the classic New Year’s resolution themes.

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Kim, Emergiblog, is the host of the latest edition of Change of Shift (Vol 4, No 13) !   It is the “Merry Christmas” edition.  You can find the schedule and the COS archives at Emergiblog. (photo credit)

It’s Christmas Eve and time for a new Change of Shift!
Between the hustle and bustle of the holiday rush (and the ending of fall semesters), the nurses of the blogosphere put fingers to keyboard and busted out a joyful Change of Shift!
Grab an Egg Nog (spiked, of course), and settle in for some nursing stories!

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H/T to @EvidenceMatters for the link to this WSJ article:  A Downside of Organ Donation by Laura Landro (photo credit)

Most transplants do indeed save lives. But as demand grows for donated organs and tissues, so do concerns about the risk of disease transmission, including deadly bacterial infections and viruses, tuberculosis, rabies, parasites and even cancers. Some experts are calling for better testing and tracking of organ donors in order to limit the number of infections, though others warn that this could have the effect of delaying transplants, producing false-positive results that would eliminate safe organs and adding costs to the health-care system.

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The “downside of organ donations” has prompted a re-exam of transplantation rules.  Denise Grady reviews this topic in the NY Times article:  Officials Re-examining Organ Transplant Rules

……….The case highlights the lack of a national policy on whether to bar people with poorly defined neurological disorders as donors. For now, the decision is up to individual transplant centers, said Dr. Michael G. Ison, ………..

Dr. Kuehnert said he wondered whether there should be a registry for donors who have brain inflammation, or encephalitis, from an unknown cause.

“It would be difficult to say, ‘Don’t ever recover a donor with encephalitis,’ ” he said. “Some may be O.K. But we don’t know how many times it’s a successful operation, and how many times a tragic operation.”

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H/T to @ChrisCoppola and @DrSonnyO  for the link to this CNN article which shows the good outcome of organ transplantation:  Pediatric heart transplant survivor: 'I thank God every day' by Madison Park.

"Not a day or minute goes by where I don't think about how lucky I am just to be here," said Farley of Hasbrouck Heights, New Jersey. "I thank God every day when I wake up that I woke up."

Around Christmas time, 24 years ago, Farley's heart was deteriorating.

Farley was 12 and couldn't walk without feeling exhausted. She'd stop to catch her breath after taking a few steps. During gym class, her lips and fingers turned purple from low blood oxygen levels. She often felt listless, and she had chronic bronchitis and respiratory infections…………

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Margaret Polaneczky,MD, TBTAM, has done an exception job explaining The New Mammogram Guidelines - What You Need to Know

Unless you've been living on another planet, you know that in mid-November, the US Preventive Services Task Force released new recommendations on screening mammography, in which they recommended against routine mammogram screening in women under age 50, and recommended that mammograms now be every two years in women ages 50-74.

What you may not have heard is that the Task Force has acknowledged that the mammogram guidelines were poorly worded, and have revised their original statement to clarify their intentions, mostly by removing those two little words "recommends against"…………..

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The Diane Rehm Show rebroadcasted their show on the "goat gland man” John Brinkley yesterday morning.  Brinkley was an amazing charlatan who was born in North Carolina, but much of his medical career was spent in Arkansas.  Her guest on the show is Pope Brock talking about his book on Brinkley:  Charlatan: America’s Most Dangerous Huckster, the Man Who Pursued Him, and the Age of Flimflam.   You can listen to the show here.

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The Dr Anonymous’ show this week will be New Year’s Eve, 10:30 pm ET.   

Upcoming Dr. A Shows (9pm ET)
1/2 : Saturday Night w/ Dr. A
1/5 : Maybe Tuesday Night Show
1/7 : Maybe Thursday Night Cancelled
1/9 : Saturday Night w/ Dr. A

When Does Death Start?

Updated 3/2017-- all links (except to my own posts) removed as many no longer active. and it was easier than checking each one.

H/T to @ctsinclair and @doclake  for the link to this December 16th NY Times article.  If you haven’t read it, it is worth the time, especially if you have any interest in this topic.

When does death start? from NYT http://bit.ly/8xGXjL

The article, "When does death start?",  was written by Darshak Sanghavi, the chief of pediatric cardiology at the University of Massachusetts Medical School, is Slate’s health care columnist and the author of “A Map of the Child: A Pediatrician’s Tour of the Body.”

The article uses the story of Amanda to discuss “brain death” and “death after cardiac arrest”  in conjunction with organ procurement.   No organs can be procured until a person has been declared dead (the so-called dead-donor rule). 

The question of “when does death start?” comes from the 5 minute of no heart activity after cardiac arrest.

In procuring organs from patients like Amanda, doctors have created a new class of potential organ donors who are not dead but dying. By arbitrarily drawing a line between death and life — five minutes after the heart stops — they have raised difficult ethical questions. Are they merely acknowledging death or hastening it in their zeal to save others’ lives?

The article takes the reader through the history of transplantation and the need to define “when death starts.”

Henry Beecher, a Harvard anesthesiologist and medical ethicist, convened a 13-member committee to write a definition of “irreversible coma,” or brain death, for The Journal of the American Medical Association.

President Jimmy Carter asked a blue-ribbon commission to examine the issue. The commission culminated in the Uniform Determination of Death Act in 1981, which defined death as “irreversible cessation of all functions of the entire brain, including the brainstem.”

The 1981 Uniform Determination of Death Act also defines death as the “irreversible cessation of circulatory and respiratory functions,” which left an opening for another source of donors.

In 1987, the nation’s pediatrics authorities tried to standardize the diagnosis, listing 14 different criteria to confirm brain death, like the absence of reflexes, and requiring, under certain conditions, additional X-rays and tests for brain-wave activity.

In 1997, the federal government asked the Institute of Medicine, an independent advisory body, to gather experts to determine how a dying donor might be treated. The experts ended up endorsing the procedure for donation after cardiac death, in which death occurs through a process of withdrawing life support and allowing the heart to develop “irreversible cessation.”

In 2004, pediatric cardiologist Mark Boucek at Denver Children’s Hospital, financed by a federal grant,  wrote a far more aggressive D.C.D. protocol that would save the heart, which was adopted after going through the hospital’s review process. His version …..most controversially, rejected the five-minute rule imposed by the Institute of Medicine and initially picked three minutes instead.

David Campbell, the pediatric cardiac surgeon at Denver who procured the first heart using the (Boucek) protocol, realized that even three minutes was too long. ….. In reviewing the medical literature, Boucek found the longest recorded time that a heart had ever stopped and then spontaneously restarted without medical intervention was 65 seconds.

The article goes on to discuss the current needs for organ donation.  It is estimated that at least 18 people on the transplantation list die each day before the needed organ becomes available.  This need makes the need for an answer to the question of “when does death start?’ extremely important.  The answer could increase the availability of viable organs.

The Institute of Medicine created a new class of potential organ donors: living patients with little hope of recovery who could be declared dead soon after life-support removal. Within a decade, the number of such donors increased tenfold; they now account for 8 percent of organ transplants nationwide, up to 20 percent in certain areas. Still, many hospitals were slow to adopt the practice.