THIS MONTH'S FOCUS:

PULMONARY HYPERTENSION &
PEDIATRIC TRANSPLANTATION

(PDF VERSION)


Many thanks to Veronica Franco and Christian Benden
(PH and PEDS Council Links Liaisons) for coordinating the focus content for this issue.




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VINCENT'S CIRCLE OF LIFE SENSE:

Like the Academy Awards it is all about performances. We have directors, producers, writers, composers, musicians, actors and their roles. We have imaginations, innovations, pioneers and time for the agonies and heartaches about prior cases beyond our control only to motivate and drive creative thoughts so all enchanted dreams will come true. Put them together and what do you got? (Bibbidi bobbidie boo), rather, a team and togetherness. It's all about teamwork, and we are all in this together. Allow me to refer you to a couple previously published Links articles: one on Collaboration, Conformity and Consensus (October 2011, p 15-16) and the other on Linking it all Together (April 2012). Of course Benjamin Franklin comes to mind as he reminds us "we must indeed, all hang together or most assuredly, we shall all hang separately." Over the last three decades we have witnessed the impressive and marvelous progress in the world of pulmonary hypertension and pediatric heartaches with new classes of medications and novel ways to use mechanical devices.

The Wonderful World of Disney is obviously part of shaping our minds at least through our children. And over the last three decades adults have learned a great deal from children about safety, using seatbelts and helmets, saying no to cigarettes, to drugs, to booze, to sugar and to bullying and saying yes to exercise, to vaccines and to other healthful habits. As such, Murali Chakinala shows us the way with the evolution of Pulmonary Hypertension Care Centers, a major lesson learned from the more than a half century experience from the Cystic Fibrosis Foundation, a lesson for adults from children or the Wonderful World of Pediatrics. The performances (fewer symptoms, longer distances walked and better quality) in the world of pulmonary hypertension as shared from their articles by Veronica Franco, Manreet Kanwar and Julia Estes show that the lives, lifestyles and symptomatic improvements in these afflicted patients today were all but a dream 30 years ago.

The Next Frontier (Sharon Chen and Beth Kaufman), the Challenges (Marc Schecter) and the Lessons Learned (Janet Scheel) come from taking what we know is best for adults and courageously applying to our little ones who we know are not just merely little adults but at least gives us the warmth, confidence and sense of well-being to push the boundaries from in utero to octogenarians. It will be only a matter of time that the adult world of transplantation, assist and supportive devices, and perhaps other forms of replacements and innovative strategies will learn from the innocence of our children and our fantasies to once again complete the cycle = adults - children - adults - children ... Hakuna matata.

Vincent Valentine, MD
Links Editor-in-Chief



ISHLT 2014

• Annual Meeting website
• Academy website
Online Registration
• 2014 Preliminary Program

IN THE SPOTLIGHT:


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ISHLT 2014 in Sunsational San Diego!

This article features highlights from the 34th Annual Meeting related to Pulmonary Hypertension and Pediatric Transplantation. Find out which sessions will be of most interest to you, and plan your trip to San Diego TODAY! Read more →




FOCUS ARTICLES: PULMONARY HYPERTENSION



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Pulmonary Hypertension Care Centers

by Murali Chakinala

Our understanding and management of pulmonary arterial hypertension (PAH) has advanced tremendously over the last 30 years. Numerous vasomodulating therapies have been developed, and their widespread use has been associated with longer survival and improved quality of life. Even though PAH remains a rare disease with challenging therapies, the delivery of health-care in PAH has been transformed from experts at tertiary care centers to a broad spectrum of providers with varying degrees of expertise, leading to non-uniformity of care. Concomitantly, PAH-specific therapy has been applied to an increasingly diverse population of patients with PH. As a result, early access to expert centers and assurances of optimal patient-care have become relevant concerns. Read more →



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Oral Prostacyclins: Our Newest Medication for Pulmonary Arterial Hypertension

by Veronica Franco

Pulmonary arterial hypertension (PAH) is a progressive, fatal disease that leads to right sided heart failure. Thirty years ago, adults diagnosed with PAH could expect to live less than 3 years, and the therapies limited to nonselective vasodilators (calcium channel blockers) and warfarin. Today, the physician has a number of choices and continues to expand with three new medications approved in 2013. Read more →



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Chronic Thromboembolic Pulmonary Hypertension (CTEPH)—Scan For It!

by Manreet Kanwar

One of the first patients I was assigned in the Internal Medicine residency clinic as an intern was a 23-year-old woman who had initially presented with worsening shortness of breath. Her work-up revealed multiple bilateral chronic pulmonary emboli and severe pulmonary hypertension. This was my first exposure to a patient with CTEPH - and I remember feeling quite overwhelmed when I realized how sick she was, and how little I knew of how to manage her! Under the guidance of my clinic preceptor, we referred her to the University of Michigan, our local tertiary care center. Through Vallerie McLaughlin's detailed clinic notes, I learned more about this disease than I ever had read about in a medicine book. Read more →



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Being a Physician Assistant in the Pulmonary Hypertension Arena

by Julia Estes

It was about 3 years ago that I took the position of being a heart failure/pulmonary hypertension Physician Assistant (PA) at Allegheny General Hospital, Pittsburgh, PA. Although the time at AGH has been short, it has been filled with remarkable experiences. Our team specializes in advanced heart failure, pulmonary hypertension, mechanical circulatory support and cardiac transplantation. One of the areas in particular, pulmonary arterial hypertension (PAH), has always been fascinating. PAH is a relatively rare disease process, which has seen an explosion in terms of changes in understanding pathophysiology and treatment in the last decade. Read more →


FOCUS ARTICLES: PEDIATRIC TRANSPLANTATION



The Next Frontier: Ventricular Assist Devices in Children With Failing Single Ventricles

by Sharon Chen and Beth Kaufman

We were honest with the parents and used terms such as "pioneering" and "innovative" to describe the operation we were offering. But we also admitted, "This surgery is still experimental. We do not know if it will work or not." Our surgeon described how he would attempt to place DG, a 1 year old with a failing single ventricle, palliated to a bidirectional cavopulmonary anastomosis, onto a ventricular assist device (VAD). The procedure would involve an extensive reconstruction of the SVC and pulmonary artery, placing a modified shunt, followed by cannulation and connection to a rotary pump. He explained the risk of anesthesia and cardiac bypass. But as for the likely success of supporting a child with a failing single ventricle with a VAD? That was much more difficult to explain and quantify. Read more →

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Challenges in Pediatric Thoracic Transplant

by Marc Schecter

The last ten (10) months have been a whirlwind. A new city, a new hospital, starting a new pediatric lung transplant program and a new role within the ISHLT have all occurred during this time. Each of these things has an element of uncertainty associated with them. Will the new program be successful? What is the culture of the new institution? How will my family adjust to a new city? Where are the good restaurants? Though these uncertainties have been ever present on my mind, they pale in comparison to the issues that plague our patients and their families. Will I be accepted for transplant? When will I receive my new heart or my new lungs? When I get my new organs, will they work? Our patients and families ask these questions every day. They trust us to make the right decision for their children. Read more →

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Lessons Learned in Transplant

by Janet Scheel

I changed institutions last year for the first time in over a decade. This sort of change often brings about an inclination to reminisce about the past. In this case my need to reminisce was not self-imposed but rather at the suggestion of UNOS who required a list of all my previous transplant experience prior to approving me as my new program's Transplant Medical Director. I didn't remember my patient's UNOS numbers but I had no problem recalling the names of all my transplant patients over the past 25 years. Although I sent UNOS a list of all my patients, it was the ones with the poor outcomes whose details I could most easily recall. It was then I realized my biggest lessons learned in transplant were from my patients. Read more →




NEWS AND ANNOUNCEMENTS:



2014 Recipients of the ISHLT Leach-Abramson-Imhoff Links Travel Awards

Please join us in congratulating Chris Ensor, Amanda Ingemi, and Simon Urschel, the 2014 winners of the ISHLT Leach-Abramson-Imhoff Links Travel Awards! These travel awards, funded in part by the generous support from W.O. and Joan Leach (Gadsden, Alabama, USA), Mrs. Sue Abramson (Birmingham, Alabama, USA) and Mr. Larry Imhoff (La Place, Louisiana, USA), were created to support the growth and development of our future leaders from within our society including physicians, nurses, and other health care professionals. Read more →



ISHLT International Traveling Scholarship Recipient Receives Further Research Support with External Grant

ISHLT Member Manon Huibers (PhD student under supervision of Roel de Weger, Pathology UMC Utrecht, NL) received an ISHLT International Traveling Scholarship to visit the lab of professor George Tellides at Yale School of Medicine (New Haven, USA) last year. Read more →



Pediatric Transplantation Council Opportunities

Associate Editor for Pediatrics, ISHLT Links Newsletter
Seeking any eligible pediatric council member and Links enthusiast. We have an exciting opportunity for a council member to get involved with the ISHLT News Link as the Associate Editor for Pediatrics. A big thank you to Christian Benden who represented the Pediatric Council as the Associate Editor from 2012-2014.

PEDS Council Vice Chair
It is time to submit nominations for Vice Chair of the ISHLT Pediatric Council. Elections for the 2014-2015 Vice Chair will be held online after the ISHLT Pediatric Council Meeting in San Diego April 2014.

If you are interested in either position, please submit a statement to Marc Schecter (Marc.Schecter@cchmc.org) or Janet Scheel (JScheel@childrensnational.org) by April 1, 2014. Please contact any of the current Pediatric Council Leaders with questions. These are great ways to get involved!



OUTTA THIS WORLD LINKS:


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Interesting, Inspiring and Intriguing Links from Around the Globe

This month's fascinating stories take us around the globe. Read courageous reports of double lung transplant survivors from Ireland, the United Kingdom, and Australia. Learn how one young Texas middle schooler pursues her passion in dance despite two heart transplants. More stories of brave children struggling to survive will warm your heart. Read more →



TATTLING LINKS:


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ISHLT Members in the News

This month features two outstanding ISHLT members in the news: Sharon Hunt is the recipient of the 2013 Hewlett Award, designed as a recurring tribute to Walter Albion Hewlett, a professor and executive head of the Department of Medicine at Stanford University from 1916 to 1925. Stuart Sweet, a world leader in pediatric lung transplantation, has been named the W. McKim Marriott, MD, Professor of Pediatrics at Washington University School of Medicine in St. Louis. Read more →



EDITOR'S CORNER:


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Slang, Dang and Hang Me

by Vincent Valentine

Jonathan Lighter, one of the leading authorities on American slang and editor of the Random House Historical Dictionary of American Slang, defines slang from Chapter Six of 2001's Cambridge History of the English Language. He writes, "slang denotes an informal, nonstandard, nontechnical vocabulary composed chiefly of novel-sounding synonyms (and near synonyms) for standard words and phrases; it is often associated with youthful, raffish, or undignified persons and groups; and it conveys often striking connotations of impertinence or irreverence, especially for established attitudes and values within the prevailing culture." Lighter further points out that "slang aims to be intentionally undignified, startling and amusing." Think about when something "slips your mind" or when you "lose your train of thought." Is it a "senior moment?" or a "brain fart?" The latter one challenges the standard, thus it is slang. Read more →



WORD OF THE MONTH:


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"Peripatetic" - related to Aristotle who taught and conducted discussions while strolling around the Lyceum. Today, it means to walk or move about, traveling from place to place; itinerant. And you might recall the line from the finale, "One" from the musical hit, A Chorus Line. One, singular sensation every little step he takes ... she's uncommonly rare, very unique, peripatetic, poetic and chic....

For a SLANG Word of the Month:

"Lace up" - popularized by Cleveland, Ohio's rapper, Machine Gun Kelly (Richard Colson Baker) meaning… as the word implies, lace up your kicks and do whatever it is you have to do, step up your game and take whatever life throws at you. Life is hard but you just should get ready and wait for what life brings you and don't give a damn about what stress you have at the moment because destiny will make it.




Contact

Vincent G Valentine, MD
Editor-in-Chief
vgvalent@utmb.edu


Editorial Staff



"I can always guess how many jellybeans are in a jar, even if I am wrong."

— Brick Tamland

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Disclaimer: Any opinion, conclusion or recommendation published by the Links is the sole expression of the writer(s) and does not necessarily reflect the views of the ISHLT.