The Mark Blog

Bookmark This: The Importance of Giving

Terrance Flynn, 2013 Emerging Voices Fellow, wrote a compelling essay on the value of organ donation. The essay was part of his volunteer project, a component of the Emerging Voices Fellowship. Terrance is currently completing Dying to Meet You, a darkly comic memoir that relates the year during which he underwent a sudden heart transplant just months after watching his daughter's birth. After waking up on Thanksgiving Day with a stranger's heart, and a six month old daughter to raise, Terrance struggles to make sense of the complexity of gratitude.


The Incredible Yes
By Terrance Flynn
 
 
Forward
 
     Three years ago I underwent a heart transplant. My daughter was six months old at the time. In the years since that Thanksgiving Day of 2010, I have been writing a memoir, Dying To Meet You, about my experience as a patient, a father, a recipient. The Emerging Voices Fellowship has deepened my examination of what it means to be given a heart as a parting gift from a stranger. For a volunteer project, I thought it would be great to speak with some of the incredible people I volunteer with as a Heart Transplant Ambassador at Cedars-Sinai Medical Center.
     There were some challenges. Originally, I wanted to focus on patient’s stories: before, immediately after, and many years following a heart transplant. In my capacity as a Cedars-Sinai Heart Transplant Ambassador, I regularly saw transplant patients, but something about having an agenda and a fairly extensive legal release to be signed in the ICU felt cumbersome. As a psychotherapist, I am keenly aware of the way the air changes in a room if I write things down as my clients speak. The interview process felt invasive to me, so I decided to gather information from other sources. My curiosity led me to other aspects of transplant: How is a heart procured? What is the future of transplanting? Who is currently changing the world of transplanting, and how? Bill Sears, head of the Heart Transplant Ambassador Program, is a friend and the type of guy who knows every­one. He put me in touch with Kelly Perkins and Jacqueline Anderson, two of the amazing people I interviewed for my article. Allison Rotter, manager of Volunteer Services at Cedars-Sinai Medical Center (with the help of Sally Stewart, Manager of Media Relations, and Barbara Leanse, Director of Volunteer Services) fast-tracked the approval process, and Dr. John Kobashigawa was kind enough to sit down with me in between his international conferences in Prague and Montreal to discuss some of the exciting changes in the field, many of which he is spearheading.
     I attended support group meetings (led by John Pappas, LCSW), conducted interviews, and attended three lectures on the current state of heart transplantation over the course of three months. Everything I learned reinforced three key ideas: Organ donation. Organ donation. Organ donation.
     I’m grateful to come to that conclusion every morning when I wake up, and every time I open my laptop to write. It is a conclusion stressed by all the people with whom I spoke who have one word of advice to the literary community of Los Angeles and beyond: register.
 
The Incredible Yes
 
     Every heart transplant is composed of two stories. Tragedy and miracle are sewn together. If there is a synchronicity of dumb luck and medical genius, a gift is given, a life saved. But everything relies on consent from the donor or the donor’s family, without which the two stories end independently; a brain dies, a heart fails permanently. This astounding procedure can only start with the incredible yes.
     Jacqueline Martinico Anderson is a procurement technician for the Cedars Sinai Heart Institute, the country’s largest program for adult heart transplants. One of the more low-tech tasks she performs is wheeling the donor’s heart, immersed in procurement solution and packed in sterile ice, across the heliport in a red Coleman cooler.
     Jacqueline meets me in the cafeteria of Cedars Sinai. She orders nothing to eat or drink, and she warns me that our conversation might have to stop so she can take the hospital elevator to the heliport on the roof. If she gets the call from the transplant coordinators, she could be rushing around the L.A. area, to northern Cali­fornia, Washington, Oregon, Arizona, Nevada, or New Mexico. She wears blue running shoes.
     Jacqueline is also poised to make an imminent move in her own life. Our meeting takes place on one of her last days as a procurement technician at Cedars-Sinai. In a few weeks, she will start medical school across the country at Georgetown University in Washington, D.C. With all this in play, Jacqueline still gives generous, focused answers, explaining the components of the fascinating job she loves and that she will soon leave to further her medical education. Becoming a surgeon is among the careers she is considering.
     “This is exciting work,” Jacqueline admits. Timing and preparation determine everything, since the heart cannot be disembodied for much more than five hours without starting the process of deterioration. Dr. Jon Kobashigawa, director of the heart transplantation program at Cedars-Sinai, specifies, “Under two hours is best.” Speed matters. With five others on the procurement team, Jacqueline rushes to the donor hospitals in a helicopter, an SUV (“usually an Escalade”), a jet, or sometimes all three. Packing well for such a fast and important trip is crucial. Sterile trays made especially for procurement must be loaded, along with cannulas (tubes) and containers for carrying the heart.
     Before the trip, however, a huge amount of paperwork must be encrypted on an iPad. These forms document the life and death issues related to organ donation: authorizing next of kin’s consent, recording blood work, and certifying a donor’s brain death. (California requires written certification of brain death by two doctors.) Once the paperwork has been completed, the physical journey gets underway in whatever mode of transportation is deemed fastest and safest.
“Effective communication is key,” Jacqueline mentions. Surgeons, perfusionists, nurses, anesthesiologists, scrub technicians, and transplant coordinators must all be orchestrated according to the guidelines of both Cedars-Sinai and the Unit­ed Network for Organ Sharing (UNOS), which manages the one nationwide list of patients waiting for a heart or other organs. California’s organ donation procurement organization, One Legacy, also plays a major role as a member of UNOS.
 
     At the donor hospital, simultaneous preparations are underway. The donor is giv­en an echocardiogram and an angiogram, and is then prepped and draped for an incision. Jacqueline arrives with the team and the procurement surgeon, and they join the anesthesiologist, nurses, and scrub techs provided by the donor hospital. Cardioplegia, or temporary, elective paralysis of the heart is induced usually by ad­ministering cold cardiolpegic solution into the heart’s circulation (selective hypothermia). The heart is routinely stopped in this way so that it is still and relatively bloodless for surgery. Cardioplegia was used in 1967 when the first heart transplant in the United States was performed.
     Before the donor’s heart is stopped, grief counselors provided by One Legacy meet with the donor’s family. They offer the family members an opportunity to design a unique verbal statement about the life of the donor, which may be read aloud in the operating room just before the procedure to remove the donor’s heart. The spoken words of the donor’s story are heard by all the medical staff in the operating room. Sometimes it is a poem. A song. A few declarative sentences. Or just the names of the donor’s children. The family statement is sometimes followed by a fifteen-second moment of silence. Other times there is no statement and no moment of silence.
     As part of the team, Jacqueline has heard these statements read aloud and partaken in the moments of silence. “I consider myself so lucky to be a part of such an amazing team and experience, both emotionally and from a medical perspective. I am still in awe that a stranger can give such an incredible gift to another stranger.”
     One organ donor can save up to eight lives. One tissue donor can improve the lives of up to fifty others. Even though Jacqueline knows this, she admits there are moments when she is struck by the sadness of the donor’s side of the transplant story. “I have twice seen large families near the helipad taking pictures and waving goodbye as we departed with the donor’s organ. It was very touching and emotional and reaffirmed how profound the transplant process is for both families involved. Just seeing the pain of losing a loved one—often a young loved one and very suddenly—it is a very sad and painful moment even as an observer.”
     After working on the procurement team for nine months, Jacqueline saw an advertisement for a volunteer position in the biopsy clinic and she immediately recognized she would get the chance to meet heart transplant recipients and learn more about their individual stories. She volunteered in the outpatient biopsy clinic, a place where patients’ recently transplanted hearts are examined for signs of infection, specifically the presence of white blood cells. “To see this side of the story is incredible. The experience balances out some of the more tragic elements of the donor side of the story.” Jacqueline sees the patients with their family members, guides them through the long hallways of the biopsy clinic, and sometimes just waits with them, listening to the future plans of those whose new hearts she had recently escorted to Cedars-Sinai. She finds it gratifying to see the process of the recipients getting on with their lives as they continue to heal.
 
     Possibly one of the best examples of post-transplant vitality is Kelly Perkins, who, in 1995 at 30 years old, received a heart from a woman in her 40s who died as a result of a fall from a horse. What makes her post-transplant activities so amazing is the fact that her recovery was such a struggle at first. Immediately after her transplant, Kelly suffered acute cellular rejection. She was one of the first patients to undergo photopherisis to treat rejection, a now common procedure that can be done prophylactically. In photopherisis, the blood is drawn out of the body and centrifuged. The white blood cells are then exposed to ultraviolet radiation before the whole blood is returned to the patient.
     Kelly slowly began to feel better after repeated cycles of photopherisis, so she planned her first post-transplant summit as a way to overcome the emotional struggle of accepting her new heart, even when her body hadn’t quite. She hiked to the top of Half Dome in Yosemite in 1996. She followed that up the next year with a hike up Mount Whitney, the tallest mountain in the lower 48 states. Kelly is the only person to have hiked Mt. Whitney with two different hearts. The climb that really bonded Kelly to her new heart, and to the deceased donor, was when she hiked to the top of Mount Fuji in Japan, bringing with her the ashes of the woman whose heart was beating in her chest.
     Kelly Perkins has since climbed Tanzania’s Mount Kilimanjaro in 2001, the Mat­terhorn in 2003, New Zealand’s Mount Rolling Pin in 2005, El Capitan in 2005, Argentina’s Cajon de Arenales in 2007, and the face of Half Dome in 2009. In 2010, Kelly and her husband Craig (who scales all the mountains with her) climbed to Batian, the highest point on Mount Kenya in Africa. A film by Evan Grimm, The Heart of Batian captured the story of this climb.
     Kelly and her husband Craig do high profile climbs that are covered extensively by the press both nationally and internationally. Kelly started a foundation called Moving Hearts (movinghearts.org) to highlight how heart transplants are impossible unless a potential donor’s heart is first moved to action by becoming a donor. Her memoir, The Climb of My Life, is a beacon to those who, like her, strive to make the most of the health that has been returned to them, especially at such a precious cost.
 
     Dr. Jon Kobashigawa moves mountains rather than climbs them. He is a world-renowned leader in the field of heart transplantation, and he currently leads a number of major multinational clinical research studies. His past medical studies have resulted in groundbreaking medical protocols. He serves as Associate Director of the Cedars-Sinai Heart Institute, Director of the Advanced Heart Disease Section, and Director of the Heart Transplant at Cedars-Sinai Heart Institute.
     When I spoke with him at his office recently, he was, like Jacqueline, in the midst of an exciting move. The transplant program he directs is moving into the brand new, state of the art Advanced Health Sciences Pavilion, an eleven-story, 820,000 square foot medical complex. The open design of the building emphasizes the importance of bridging the gap between research and patient care, both of which will coexist under one roof. The stem cell lab occupies the top two floors of the building, where the field of cardiovascular genomics will continue to flourish under Dr. Eduardo Marban, director of Cedars-Sinai Heart Institute.
     Dr. Marban is a pioneer in stem cell re­search for heart disease, and his recently published findings show for the first time that some types of heart damage previously thought to be irreversible were in fact reversible. Dr. Marban is the first in the world to have success in actually regenerating heart muscle from stem cells derived from the patient’s own heart. The cells are infused via catheter into a major artery near the patient’s heart, and, therefore, no open-heart surgery is required. This research has begun to change the future of heart failure treatment.
     At a recent talk on the state of heart trans­plantation, Dr. Kobashigawa listed some of the varied directions of heart transplantation research. For example, an organ care system referred to as “heart in the box” technology would allow the do­nated heart to be perfused with the donor’s blood as well as oxygen and nutrients that can more effectively prevent cell death. While the current practice of chilling donor hearts before a transplant slows the rate of cell death and buys time to get the organ to a recipient, the thinking is that a heart in a box will be in better shape if it is warm and beating until shortly before the transplant. More exact matches are made possible if travel time no longer dictates a limited geographical pool of donors. A heart from the West Coast, for example, could be matched more precisely with a recipient on the East Coast. The heart in a box could keep the donor’s heart in good shape as it travels across the country safely, rather than in a race against the clock.
 
     Cedars-Sinai is one of the centers currently transplanting SynCardia Total Artificial Hearts made from titanium, ceramic, and other materials. The Total Artificial Heart is used now mostly as a bridge to transplant for those waiting to be matched with a human heart. The Total Artificial Heart replaces the recipient’s heart, unlike an assist device implanted alongside the patient’s ailing heart.
     Dr. Kobashigawa also mentioned auto-transplantation, the provocative idea of transplanting an organ that is derived from one’s own tissues. Whole organ engineering is being researched with rat and pig hearts that are being reseeded with cardiac stem cells onto a frame of cartilage and live cells. Auto transplantation would have the advantage of circumventing the whole challenge of immunosuppression. Xenotransplantation is still being explored, though Dr. Kobashigawa mentions that crossing the species barrier carries very high risk of zoonosis, the transmission of disease between species. Xenotransplantation was done in 1984 with the case of Baby Fae, who died 21 days after receiving a baboon heart at Loma Linda University Medical Center. This case ignited a storm of legal and ethical debates that continue to this day.
     The transplant story is dynamic above all else. Young professionals such as Jacqueline may choose to follow visionaries like Dr. Kobashigawa into the future of saving lives by moving hearts. Kelley Perkins has also moved hearts. Her high profile and inspirational projects have had a marked impact on the increase of organ, blood, and tissue donation. Kelly has stopped climb­ing mountains for the moment, although there are not many she hasn’t climbed. With her husband Craig by her side, she continues to thrive some 18 years after receiving her new heart.
     Meanwhile, 3,522 people are waiting for a heart in the United States as of July 19, 2013. Some will die waiting. In 2012, an average of one person a day died while waiting for a heart, according to UNOS and the Organ Procurement and Transplantation Network (OPTN). It is clear that the donor is the most important person in the transplant story—and the only one capable of granting the incredible yes.
 
Register as an organ, eye, and tissue donor here.