Sybil Jackson has always been known as the one in her family who could move mountains.
On March 10, 2003, Jackson received life-changing news. It was bigger than any mountain she had ever moved. She was in congestive heart failure. Tests revealed that she had familial dilated cardiomyopathy. Only half of her heart was functioning. Heart failure is a progressive disease that typically does not get better.
Over the next two years, Sybil pushed. But the mountain did not move. She was tired and fatigued all of the time. Doctors changed and adjusted her medications frequently. She lost track of how many times she was in and out of the hospital for tests and various illnesses.
Then she developed pneumonia. She was admitted to The Nebraska Medical Center where she received the most unsettling news yet. One of the doctors who was following her was Ioana Dumitru, MD, transplant cardiologist and medical director of the heart failure and cardiac transplant program at The Nebraska Medical Center. Dr. Dumitru told Jackson that if she didn’t have a heart transplant, she would probably die within the next five to 10 years. She was only 29 years old at the time.
The news was hard to swallow. It wasn’t so much that she needed a heart transplant, but it was the fact that she didn’t qualify for a heart transplant. She would have to quit smoking and lose more than 150 pounds before she would even be considered.
“I was a very noncompliant patient at the time,” recalls Jackson. “I was only 27 when I was diagnosed and I had a really hard time dealing with being so sick all of the time. I tried losing weight and quitting smoking a few times but was mostly unsuccessful. But when I met Dr. Dumitru, things changed. She had a way about her that brought out the fighter in me. I was determined to lose the weight on my own and prove to her that I could do it.”
Jackson dug in her heels, and slowly she began to move the mountain.
About a year and a half later, Jackson scheduled an appointment to see Dr. Dumitru. She had some good news to share. She had quit smoking and had lost 100 pounds. While she had made great strides, she still had more than 50 pounds to lose. But her weight had plateaued. It seemed that no matter what she did, the scale would not budge.
In the meantime, Jackson’s health continued to spiral downward. A defibrillator, that had been implanted several years ago, began to fire with more frequency. Her potassium levels dropped erratically to dangerously low levels. Piercing pain in her abdominal area led to the removal of her gallbladder. A transplant was imminent. Dr. Dumitru referred Jackson for weight-loss surgery to help her shed the additional weight. In December 2008, Jackson underwent a weight-loss surgical technique called the gastric sleeve. Within three months, she had lost the additional 50-plus pounds necessary to qualify for heart transplantation.
The mountain inched forward.
When Dr. Dumitru saw Jackson again, she was back in the hospital. Her defibrillator had fired seven times, landing her in the emergency room. Tests revealed that her heart was functioning at only 5 to 8 percent. Dr. Dumitru listed her for a heart transplant that night. “I was in shock because all of my hard work had finally paid off,” says Jackson.
However, by the next morning, Dr. Dumitru told Jackson that she was getting worse and that she probably wouldn’t make it if they waited until a donor heart became available. She suggested Jackson have a mechanical assist device implanted to buy her extra time.
“I was really scared,” recalls Jackson. She didn’t know much about mechanical assist devices and the whole idea frightened her. “I didn’t know if I would make it through surgery. But then I told myself, ‘I didn’t come this far to fail now. I had to go through with it.’”
The mountain moved again.
Jackson had a left ventricular assist device (LVAD) implanted the next morning. LVAD is a battery-operated mechanical assist device that is surgically implanted to help maintain the pumping ability of the heart.
The Nebraska Medical Center is the only medical center in the region with a mechanical circulatory support program. The program recently received Disease Specific Certification for Ventricular Assist Devices from The Joint Commission. The first mechanical assist device was transplanted at The Nebraska Medical Center in 2004, but the program didn’t really take off until the arrival of Cardiovascular Surgeon John Um, MD, in 2009.
Dr. Um is surgical director of the Cardiac Transplantation and Mechanical Circulatory Support Program at the University of Nebraska Medical Center (UNMC). He completed medical school at Brown University School of Medicine and his general surgery residency at Robert Wood Johnson Medical School in New Brunswick, N.J. He did his Cardiothoracic Surgery residency at the University of California San Francisco. Dr. Um also completed a fellowship in thoracic transplantation and mechanical assist devices at Duke University School of Medicine, one of the top LVAD training programs in the country. There, Dr. Um performed approximately 50 mechanical assist device surgeries. He has performed an additional 31 surgeries since joining the staff at UNMC.
The need for a mechanical assist device has become a critical component of The Nebraska Medical Center’s heart transplant program because waiting times for a heart transplant has increased as a result of a shortage of donor hearts nationwide. “The heart transplant program can’t survive without the mechanical assist device,” says Dr. Dumitru. “It has become an integrated part of the program.” The Nebraska Medical Center is also home to the only heart transplant program in the region. Last year, the program increased the number of transplants by 50 percent to 21, up from 14 in 2009.
Traditionally, heart transplantation has been the gold standard of care for treating severe, end-stage heart failure. In many patients, however, transplantation is not a viable option due to advanced age or concurrent medical conditions. For these patients, the device is being used more frequently for long-term therapy, also known as destination therapy. With continued improvements in technology, Dr. Um says he sees this trend growing.
Additional candidates for the LVAD include: very sick patients who might not otherwise survive while they wait for a donor heart to become available, patients who are too sick to survive a heart transplant (the LVAD buys them time to recover and become stronger for a transplant), young patients who need time to allow their hearts to recover, and people with medical problems that would interfere with immunosuppressant drugs.
“The mechanical assist program is really changing and growing quickly due to new technology that is producing better devices that are more durable, last longer and are more effective,” says Dr. Um.
For example, the first generation devices had a one-year survival of 50 percent and a two-year survival of 25 percent. The second-generation devices that were introduced in 2008 have improved survival times significantly with a one-year survival of 76 percent and a two-year survival of 63 percent. Additional technological improvements have increased these numbers even more, although formal data is not yet available.
Approximately six years is the longest time a patient has been on one of these devices. If the device wears out, a new device can be implanted. “We don’t know how long someone can live with one of these devices,” says Dr. Um. “It’s still too new and with technological advances occurring all of the time, survival time keeps moving up.”
The future for mechanical assist devices looks very promising. “We may not be far from the day when mechanical hearts will replace human hearts,” says Dr. Um.
Several of Dr Um’s patients who have received the mechanical assist device are living quite happily and have asked to be taken off the heart transplant list. “The quality of life for these people is very good, says Dr. Um. “I’ve had people who have gone from being bedridden to doing whatever they want, aside from swimming or contact sports.”
Before patients can become candidates for a mechanical assist device, they must undergo an extensive heart transplant evaluation process that involves a variety of testing and meeting with social workers and psychologists. If they do not qualify to be a donor heart transplant patient, they may then be considered for a mechanical assist device.
One of the major benefits of a mechanical assist device is the elimination of side effects caused by immunosuppressant drugs, one of the leading causes of secondary health issues in donor heart transplant patients. These patients also have fewer co-morbidities such as high blood pressure, high cholesterol, renal failure, infections and cancer. Some of the biggest challenges associated with mechanical assist devices include the need to take anticoagulation medications, increased risk for stroke and risk of infection at the site where the electrical wires exit the body.
When Sybil Jackson awoke from surgery after receiving an LVAD, she was both excited and overwhelmed, “I thought, ‘what in the world have I done to myself?’ I called my best friend and cried and cried. She just listened and gave me encouragement. I had been through so much up to this point. I guess I just needed to vent and get it all out.”
At Jackson’s three-month exam, she was feeling better than she had felt in a long time. “I was shopping, garage saling and hosting parties at my house,” she says. “Things I hadn’t done for a long time.”
But the news from the doctor wasn’t so good. Dr. Dumitru told Jackson that now the right side of her heart was beginning to fail. Her urgency ranking for a heart transplant was stepped up. It was somber news for someone who had been through so much already. Preparing for the worst, Jackson began to get her financial affairs in order and began writing thank-you cards to all of the people who had supported her over the last few years.
But Jackson didn’t have much time to worry. Just two days later, on May 25, 2009, she received the phone call. A donor heart had become available. The heart transplant coordinator told her to pack her bags and get to the hospital immediately. “It all happened so quickly that I didn’t have time to think or be scared,” says Jackson. Less than two weeks later, Jackson was home again with a new heart and a new perspective on life. She had moved the mountain.
When Jackson looks back, she calls the experience a “life-altering” one. Today, Jackson is doing all of the things she couldn’t do before. She is attending school full time to get her bachelor's degree and plans to go on to pursue a master's degree in counseling. She is traveling, seeing friends, eating better and exercising. “Before, I was tired all of the time,” recalls Jackson. “I felt like I couldn’t do very much because I was afraid to be too far from The Nebraska Medical Center in case something went wrong. Now I have my freedom again.”
Jackson says she is dedicating the rest of her life to giving back. She has become a vocal advocate for organ donation and talks to other transplant patients whenever she gets a request. Once she completes her degrees, she wants to work with developmentally disabled children. “After all I’ve been through, giving back is the least I can do,” says Jackson.
Jackson says she couldn’t have done it without the support of family, friends and the staff at The Nebraska Medical Center. “I don’t know if I would have done it if Dr. Dumitru hadn’t been so blunt with me,” says Jackson. “It was a very powerful punch. And once she saw that I was serious about making changes in my life, she was behind me all of the way.”