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Gift of Life

Author: Karen Hart
May, 2015 Issue

Life was about to reroute the Keegans along a journey they hadn’t anticipated.

 
Thirteen years ago, Jim Keegan and his wife, Diane, were embracing midlife and training for a 10k race in San Francisco. Jim was 54 years old at the time, and neither of them was concerned about a routine checkup he’d scheduled with his doctor. On the day of his appointment, an electrocardiography (EKG) showed something was wrong with his heart; a further test was ordered and the Santa Rosa real estate broker learned soon after that he had an idiopathic severe ventricular tachycardia. (Tachycardia is a rapid heartbeat that arises from improper electrical activity of the heart, presenting as a rapid heart rhythm, that starts in the bottom chambers of the heart, called the ventricles. It was idiopathic, meaning they don’t know what caused it. In Keegan’s case, doctors think it was caused by a virus getting into the electrical nodes in his heart.)
 
The news was shocking. Jim researched his condition and discovered online that he had a 75 percent chance of living five years and a 50 percent chance of living 10 years. The statistics were sobering. “We knew he’d probably need a heart transplant in the future,” says Diane.
 
Life was about to reroute the Keegans along a journey they hadn’t anticipated. A defibrillator (a device that delivers a therapeutic dose of electrical energy to the heart) was surgically implanted in Jim’s chest. He felt fine then, thanks to the medical expertise of his cardiologist John Reed, M.D. in Santa Rosa. For the next 10 years, life went on as usual.
 
Then Jim’s heart started to fail him. “I felt crummy and had no energy,” he recalls. On June 7, 2013—his 65th birthdayhis defibrillator had “a storm,” shocking him nine times. “It was scary and painful,” he says. Jim went to Santa Rosa Memorial Hospital. A few days later, he was sent to UCSF Medical Center where he learned he had two options: live in the hospital hooked up to IVs or get a mechanical pump (known as an LVAD, or left ventricular assist device) that would keep him alive while waiting for a donor heart.
 
Jim opted for the LVAD and waited for a heart. “My heart was disintegrating. I knew that, without a transplant, I’d be dead soon,” he says. On December 4, 2014, he was moved to a 30-day priority waiting list, but there were daily challenges. He was isolated at home, unable to risk getting sick with a cold or the flu before a major surgery, explains Diane. But what was most difficult for the Keegans, however, was coping with the psychological implications of what heart transplant surgery meanstragedy and loss for another family. “You’re waiting for someone to die,” says Diane. “It’s a hard concept—and it’s a balancing act.”
 
There was also no guarantee a donor heart would become available “I was hopeful and confident for the first 15 to 20 days but, by the last week, I’d given up,” Jim says. On January 3, thinking his best chance of receiving a heart transplant was about to end and growing weary of staying home, Jim and Diane packed a picnic and drove to the coast. But cell phone service was spotty, and Diane worried they might miss a life-saving call. They returned home and, within half an hour, Jim received the call.
 
A young man had died in an accident, and Jim was scheduled to receive his heart via transplant by Georg Wieselthaler, M.D., director and surgical chief of cardiac transplantation and mechanical circulatory support at the University of California San Francisco (UCSF) Medical Center that night. Jim was in surgery for eight hours. The next morning, a donor heart was beating in his chest and, at age 66, Jim Keegan had a second chance at life.
 
His recovery process included two days in the intensive care unit and eight days on the cardiac care floor with other heart and lung recipients. Then the Keegans rented a flat in San Francisco for Jim’s rehabilitation, which required blood tests at the hospital three times per week and weekly biopsies to ensure his body wasn’t rejecting the new heart.
 
“Jim is an outstanding patient,” says Wieselthaler, who’s performed more than 300 heart transplants during his career and assisted with an additional 600. “He asks questions, takes an active role in his own care and takes his medications precisely.”
 
In a Facebook post to family and friends on February 20, Diane wrote: “You’ll all be glad to hear that Jim’s biopsy this week shows ZERO rejection. Your prayers are working, my friends. Thank you. XO.” On March 5, six weeks following surgery, the Keegans returned to their Santa Rosa home.
 

The history of organ transplants

The first human organ transplant was a kidney transplant performed in 1954. The kidney donor was the identical twin of the recipient and, as a result, there was no immune system rejection of the organ. The recipient lived for eight years and the surgeon who performed the transplant, Joseph Murray, M.D., went on to win the Nobel Prize for his work. The recipient of the first heart transplant, performed by Christiaan Barnard, M.D., in 1967, in Cape Town, South Africa, lived only 18 days. The patient didn’t die because the new heart failed or was rejected, but because he contracted pneumonia and his immune system was compromised due to the anti-rejection drugs he had to take.
 
These two cases demonstrate the promise and challenge of moving an organ from one body to another. “Christiaan was a driven person and had a pioneering spirit. He was willing to give it a try. The concept worked and, today, we have patients who’ve survived their heart transplants for more than 25 years,” says Wieselthaler, who’s from Vienna, Austria, and was a friend of the late Dr. Barnard.
 
Since the early days of heart transplantation, major strides have been made, particularly in preventing rejection. “Heart transplantation has changed in the past 40 years and we’ve made great progress,” says Wieselthaler. “Today, we can effectively prevent rejection of the donor graft nearly 100 percent of the time by tailoring the right medications. With this, patients don’t have the same deadly risk for infections that they had in the early days of transplantation, and we’re getting better and better.”
 
According to an online search, about 2,000 heart transplants occur each year in the United States. “Patients with severe heart failure, an ultimately deadly disease, become desperate and have a lot of anxiety. They think life is gone, but they have options and should contact specialized centers for treatment of advanced heart failure,” says Wieselhalther. After a heart transplant, you can live a nearly normal, active life, he says. “You can walk long distances without shortness of breath, fly on an airplane, or go mountain climbing,” he adds.
 

Transplant centers

North Bay residents in need of organ transplants are most often referred to California Pacific Medical Center, Stanford University Medical Center and UCSF Medical Center.
 
California Pacific Medical Center (CPMC), a Sutter Health affiliate located in San Francisco, offers kidney, pancreas, heart and liver transplantation at the Barry S. Levin, M.D., Department of Transplantation. Its history dates back to 1969 when surgeons performed the first kidney transplant.
 
Currently, CPMC performs about 70 liver and 200 kidney transplants per year and has done about 450 heart transplants since its inception. More than 1,800 liver transplants have been performed since the program began in 1988. What’s more, in 2014, CPMC was identified as the nation’s only hospital with both kidney and liver transplant programs that have higher-than-expected one- and three-year adult patient survival rates, according to the Scientific registry of Transplant recipients (SRTR).
 
The transplant programs at Stanford Healthcare in Palo Alto have been at the forefront in the field of transplantation for decades. The first adult heart transplant in the United States was performed at Stanford in 1968; and the first combined heart-lung transplant in the world was performed there. Other transplants include abdominal, kidney, liver and pancreas, which have been performed since 1991. In 1998, the hospital began a combined liver-and-intestine program.
 
Today, Stanford Healthcare also performs transplants for blood and marrow, heart, lung, heart-lung and more. Approximately 4,938 transplants have been performed at Stanford Healthcare to date.
 
The children’s transplant program, known as Stanford Children’s Health, was established inthe ’90s and is the top children’s pediatric program in the nation.The most common type of organ transplants for children are kidney, liver, heart, lung and intestinal. About 100 organ transplants are performed on children there each year.
 
The Organ Transplant Service at UCSF Medical Center is one of the largest and most highly regarded in the world. It’s also a leader in kidney and liver transplants, drawing patients from throughout the United States. Since the program was founded in the 1960s, it has grown to include heart, intestinal, kidney, liver, lung and pancreas transplants.
 
The Connie Frank Transplant Center at UCSF provides care for patients seeking pre- and post-kidney and pancreas transplant services. Since it was established in 1964, UCSF has performed more kidney transplants than any other hospital in the world. As a major transplant center in the West, UCSF’s kidney team evaluates about 1,200 patients per year as potential transplant candidates. Currently, UCSF performs more than 300 kidney transplants per year.
 
Each year, more than 20 heart transplants are performed at UCSF Medical Center. More than 300 patients have received heart transplants, including 10 heart-lung and 20 heart-kidney transplants. The one-year survival rate for heart transplantation at UCSF was 96 percent compared to a national rate of 90 percent, according to recent data from the SRTR.
 

On the horizon

What’s on the horizon for organ transplants? “The technical aspect of heart transplantation hasn’t changed much in the past 40 years, but in terms of anti-rejection medications, we’ve made enormous progress,” says Wieselhather. “Every day, we learn more and more about the immune system and get new, effective drugs for anti-rejection therapy. But the future might also bring ‘induction of tolerance’ of the donor organ, which means we try to modify the organs so the body doesn’t recognize a donor organ as a foreign tissue.”
 
“The transplant community of clinicians and health care professionals is committed to improving quality outcomes for transplant patients and the equity of organ donation,” adds Kim Standridge, director of business and transplant outreach operations at Stanford Healthcare.
 
Debra Strichartz, interim administrative director of pediatric transplant at Stanford Children’s Health, hopes to see advances in genetic testing that could identify children who don’t require medication. “One of the most difficult challenges of pediatric transplants is the need for lifelong medications that have serious side effects,” she says.
 
In addition, transplant centers such as CPMC are using software programs to find match donors. There’s a shortage of organs, especially kidneys, according to Christi Moyle, director of the department of transplantation at CPMC.
 
CPMC is a pioneer in “paired kidney donations.” CPMC implemented a Paired Kidney Donation Programa swapin 2003, with the program really getting started in earnest in 2007. With paired kidney donation, pairs of incompatible recipients and donors are matched with other pairs, resulting in two or three (or more) successful transplants. A software program was developed by CPMC transplant recipient David Jacobs to help with paired kidney donations. “The program has become more popular in the last five years,” says Moyle. “The swaps are growing and becoming an important part of living donor implants.”
 
In March, the software helped identify recipients and donors for a six-way swap. A Sacramento woman offered to donate a kidney, thinking she would help one person, but the swap resulted in five more sick people getting new kidneys. This resulted in the largest kidney donation chain in the transplant center’s 44-year history.
 

A heartfelt journey

After 13 years of tests, assessments, medicine, surgical procedures, heart failure and a heart transplant, life is returning to a more normal pace for the Keegans, but the experience has touched them deeply.
 
“When you get on this road, you don’t know where it’s going to take you,” says Diane, who wears a bracelet with a silver heart and red beads on her wrist in honor of the young man who died and the family that lost him. “Jim was close to death; I was close to losing him. You have to embrace each day, look at the bright side of life and not look backward. We dwell on the positives of what transplants can do.”
 
“The whole process changed me,” adds Jim. “You know your mortal time is limited. I’m not worried about material things. You think about who you are as a person and how you want to spend your time. It’s been a productive journey. I have four children and 10 grandkids¾a lot to live for.”
 
As for the new heart beating inside his chest, the loss of a young man—and his grieving family—doesn’t escape the Keegans, who’ve been married for 43 years. “This is the ying and the yang of it,” Jim says. “We pray for that young man every night. It’s bittersweet; we always think about that.”
 
“We’re grateful for our blessings,” says Diane. “I’ll never forget what my family has received.”
 

Organ Transplant Needs

More than 134,000 people are currently on the United Network of Organ Sharing (UNOS) National Organ Waiting List, according to the Donor Network West. Another name is added to the national transplant waiting list every 13 minutes. About 20 percent of the national total (roughly 23,000 people) are listed at California transplant centers.
 
Organs that can be donated after death include heart, liver, kidneys, lungs, pancreas and small intestines. Tissues include corneas, skin, heart valves, tendons, ligaments and bones.
 
The cornea is the most commonly transplanted tissue. More than 40,000 corneal transplants take place each year in the United States.
 

Got the Dot?

Nationwide, about 21 people die each day waiting for an organ transplant that didn’t come in time, according to Donor Network West. Did you know that one organ donor can save up to eight lives and one tissue donor can improve the lives of up to 50 others?
 
Organ donation is the best thing you can do for another human being with dramatic need, says Dr. Wieselthaler of UCSF Medical Center. “It’s the highest gift—and the greatest expression of love,” he says.
 
“A patient waiting for a donation could be someone from your family, your workplace, your neighborhood or your city,” adds Ruth Brentari, executive director of national transplant services of Kaiser Permanente.
 
For more information or to register as an organ donor, go to www.donornetworkwest.org.
 

Living Donors

A healthy person can be a “living donor” by donating a kidney, part of their liver, lung, intestine, blood or bone marrow, according to the American Transplant Foundation. In addition:
 
• More than 6,000 living donations occur each year; and
 
• One in four donors is not biologically related to the recipient.
 

Common Myths

Here are a few common myths and facts from the California Transplant Donor Network.
 
Myth: “Medical professionals won’t save my life if they see the pink dot on my driver’s license.”
 
Fact: Medical professionals are dedicated to saving the lives of the patients in front of them. In all cases, the medical professionals treating you in an emergency situation are not involved in organ/tissue donation or transplantation. Their goal is to save your life, period.
 
Myth: “I have a chronic condition (such as cancer or diabetes) and I’m not in the best of health, so I know you won’t want my organs.”
 
Fact: Suitability for organ and tissue donation is assessed after someone has passed on. It’s best to decide whether you want to be an organ/tissue donor and not rule yourself out.
 
Myth: “Donation is against my religion.”
 
Fact: All major religions support organ and tissue donation as a personal choice—and the most compassionate act.
 
For more information, check out “Common Myths” online at the Donor Network West.

 

 

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