Many thanks to Erin Wells & Brandon Larsen for coordinating the content for this month's issue.


links imageIn this issue, we put Melissa Cousino in the spotlight as it delivers to us the difficult role of a transparent, candid, sensitive understanding, compassionate and most importantly a truthful conversation about pain, suffering and dying when death is on the horizon in our pediatric population. This is a must read for the IHSLT which can easily apply to our adult population, thank you. Brittany Rhoades recapitulates the role Steve Jobs has had on the ISHLT to improve our skills at making communication endure, that is -writing to publish. It is Linda Staley who gives us the truth of Gustav Stiehl and destination therapy for over 3180 days longer and counting. Next, we have Erin Wells bluntly and appropriately advising us in her must read "Showing Up" is all it takes. Think about it, perhaps among the best forms of communication is just being there without saying a word, especially in the most trying times. Finally, Monica Horn nudges our heart on a glance back to where we have come from two decades ago.

Oh and be sure to have a look into the Editor's Corner.

Vincent Valentine, MD
Links Editor-in-Chief


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"I didn't know this could happen:" Discussing Difficult News with Pediatric Transplant Patients

Melissa K. Cousino, PhD

Just days before she died, an adolescent lung transplant recipient who experienced a brain hemorrhage a few months post-transplant, wrote six words to me, "I didn't know this could happen." Prior to transplant, the risks and benefits, including potential for death, were reviewed in detail with her parents. Her family lovingly asked that the team remain positive and optimistic in her presence. During a time of relatively good health, she herself stated that she was comfortable with any decisions her parents made for her. She preferred that her parents be given the detailed information about her medical course and treatment. However, post-transplant, in the midst of a tumultuous recovery course, including an inability to speak due to a tracheostomy, she began to withdraw and show increased signs of anxiety and distress. Read more →


"Real Artist Ship" - Steve Jobs

Brittany Rhoades, MSN, APRN, CCNS, CCTN

links image Fall has officially begun! There are two things that are almost guaranteed during this time of year: The leaves will not change color in Texas and Apple Inc. will be holding a spectacular launch event to showcase products with capabilities that we never knew we needed, but soon cannot live without. Regardless of your mobile device preference, the Apple release typically stirs a reasonable amount of curiosity for all. In 1983, Apple Inc. launched the first Macintosh computer. I highly doubt the company or creators were envisioning the iPhone 7 that would come 33 years later. However, the Macintosh and the company's "Think Different" mantra was the beginning of something spectacular. It's hard to imagine Millennials answering phones that still sing Hello Moto. Not only have Apple products strongly shaped current culture, but also society has loosely coined the post millennial youth the iGeneration. Read more →

To Infinity and Beyond: What Does Destination Therapy Mean to Me?

Gustav Stiehl
Linda Staley, MSN-NP

Destination therapy is a permanent, advanced heart failure therapy that involves a surgically implanted mechanical heart pump used to support a patient's failing left heart ventricle. This therapy is intended for patients who are not candidates for heart transplantation. For a patient, this means that he or she will live the remainder of their life mechanically supported with a left ventricular assist device (LVAD), a mechanical therapy to to manage their end-stage heart failure. Living with the LVAD becomes a way of life for the patient and caregiver, usually a family member. They both learn to manage the equipment, such as batteries and the controller, and at-home procedures, such as dressing changes, that are part of their everyday life. Most patients choose LVAD therapy to improve their quality of life and to experience fewer heart failure symptoms, allowing them to spend more time with their family and loved ones. Living with an LVAD is not without risk, and often complications can occur while on the mechanical support that can reduce the patient's quality of life and can cause time spent in the hospital. Read more →

Showing Up

Erin Wells, BSN, RN, CCTC, CPN

links imageIn thinking about this month's edition, I must confess that I had a bit of writer's block and even thought about skipping out this time around. Given the fact that I have moved to a new city, started at a new institution, crossed the line into the world of adult healthcare and stepped into a manager role for the first time this summer, change might have been an easy target. My inspirational muse however was having none of it. As a huge fan of Brene Brown's work, I have read this quote about showing up more than once. When I came across it again on Friday, I took it as the universe giving me a nudge. When interviewing people for any position in transplant, I always tell them this work is the rollercoaster ride of a lifetime and there is never a dull moment in transplant. Most of us could work around the clock and still never check off all of the boxes on our "to do" lists or ever completely tackle that perpetual someday pile on the corner of our desk. Read more →

What Were You Doing in 1996?

Michael Young, Heart Transplant Patient, Coach
Monica Horn, RN, CCRN-K, CCTC

It was the 1990's. Beanie Babies, Power Rangers, Tickle Me Elmo, and the first round of Pokémon were the rage! Do you remember when Starbuck's started making Frappuccinos, PlayStation was released and eBay made its debut? Recently, when we informally surveyed colleagues regarding what they did in 1996, most seemed to need to pause and think carefully to remember. Many referred to school, medical fellowships or described just getting into childhood mischief. Life is certainly unpredictable. Sometimes it includes unexpected detours that disrupt our best laid plans. Ah yes, the 1990's...ventricular assist devices were continuing to move beyond research and becoming more of a reality. 14 year old Michael had been diagnosed with dilated cardiomyopathy as a young child but his parents had kept him stable with regular visits to his cardiologist at Children's Hospital Los Angeles (CHLA). However, by 1995, things began to change. He began to feel more tired, short of breath with activities, and loss of appetite. Read more →


A Brief Update from the Pathology Council

Brandon T. Larsen, MD, PhD

links imageThe Pathology Council has been busy in 2016. As in recent years, antibody-mediated rejection (AMR) has remained a strong focus of our Council's efforts as we seek to better understand the phenomenon of AMR and the nature of "mixed rejection", to refine our diagnostic criteria and relevant biomarkers for such, and to disseminate this information to pathologists. To this end, the Council put together several collaborative research groups this year during the last Annual Meeting to facilitate multi-center studies on these topics, and our members continue to expand available online resources for transplant pathology. Read more →



Interested in collaborating with a related professional Society on a Symposium for the 2018 ISHLT Annual Meeting? See below for details and deadlines. Note: all ideas for joint symposia must be vetted through the Education Workforce Leader of a relevant ISHLT Scientific Council. Read more →


Vincent Valentine, MD

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What are you looking for? At times, it best to let others speak. Reread this must read issue.

Happy Halloween!


Vincent G Valentine, MD

Editorial Staff

"You are so brave and quiet I forget you are suffering."
— Ernest Hemingway

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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.