Frank Stenzel, 69, lives his life to the fullest and never lets his heart condition get in the way of his passions. His favorite activities are hunting and fishing, and he was a volunteer firefighter for 40 years in his hometown of Amboy, Illinois, south of Rockford, even serving as the fire chief.
Frank lived an active life despite his cardiomyopathy since his mid-30s. Cardiomyopathy is a disease of the heart muscle that can lead to heart failure. He managed his symptoms with medications, but as the disease progressed, the therapies stopped working.
“I was in bad shape,” Frank said. “It got to the point where I was out of breath and extremely weak. I didn’t have any energy. I didn’t realize I was as sick as I was until I collapsed.”
Advanced Heart Failure Expertise Referral
In February 2020, Frank’s wife, Karen, rushed him to the hospital in Rockford. The doctors recognized timing was critical and Frank needed more advanced care for his heart failure. They referred him to the Comprehensive Heart Failure and Transplant Program at Froedtert Hospital, the academic medical center of the Froedtert & the Medical College of Wisconsin health network, and he was admitted the same day. Frank was in severe cardiogenic shock. His heart was not able to pump out enough blood to meet the needs of his body.
Over the next month, Frank’s heart would need three different mechanical support devices. To increase his blood flow as quickly as possible, the team inserted an Impella® heart pump, a device used in the short term to support the heart’s left ventricle, the main pumping chamber of the heart. Within a matter of days, Frank was stable, but his heart muscle was still too weak, and his kidney function had decreased too much for him to be able to have a heart transplant.
Frank’s best option was a left ventricular assist device, or LVAD. An LVAD is surgically implanted and it can be used long term to improve a heart failure patient’s quality of life or as a potential bridge to transplant. Frank’s left ventricle improved with the LVAD, but it turned out that his heart’s right ventricle also needed support.
He had an RVAD implanted too. “There were days when I didn’t think I would live,” Frank said. “But no matter what, I told myself I was going to get through this. I wanted to be able to get back on the boat and be able to take the fishing trip to Canada that I go on each year, without any limitations. Fishing with an LVAD or RVAD would be really difficult, so that was part of my motivation. There were hard days when I didn’t feel like I could go on, but Karen pushed and encouraged me. We did my exercises together.”
After extensive cardiovascular rehabilitation, occupational therapy and physical therapy, Frank was able to go home. He diligently continued his exercises, always hopeful he could get strong enough and healthy enough to be eligible for a transplant. In June 2020, Frank reached his goal and was listed for a heart.
“It was his determination and strength that ultimately put him in a position to become a transplant candidate,” said Nunzio Gaglianello, MD, advanced heart failure and transplant cardiologist and MCW faculty member. “We gave him the highest level of hemodynamic support up front that allowed him and his organs to regain function. He was also extremely motivated.”
Clinical Trial Leads to Heart Transplant
The wait time for a donor heart depends on the severity of a person’s heart failure. Frank’s LVAD would buy him time, but a heart transplant is the gold standard treatment for end-stage heart failure patients. However, only a small subset of the population can get a heart transplant because of a dire shortage of donor hearts. Frank might have waited years for a donor heart, but a national clinical trial* available at Froedtert Hospital meant he had the opportunity to receive a heart much sooner.
“This clinical trial was the opportunity of a lifetime for me,” Frank said. “I was more than happy to participate because I want to be a part of medical advancements that may help other people with heart failure.”
A New Way to Procure Donor Hearts
A clinical trial approved by the Food and Drug Administration, the Donor After Circulatory Death (DCD) Heart Trial, aims to expand the donor pool for heart failure patients awaiting transplant by recovering hearts from DCD donors, people who died due to circulatory death or cardiac death, in other words, because their heart stopped beating. The clinical trial is the result of years of medical research aimed at making more donor hearts available.
As part of the trial, once a heart is recovered from a DCD donor, it is preserved inside the TransMedics® Organ Care Heart System (OCS™). The OCS is a machine that keeps the donor heart perfused with warm, oxygenated blood, allowing it to be monitored in a beating state for the length of time it takes to transport to the recipient. The OCS is nicknamed a “Heart in a Box” because it mimics how the heart acts inside the body. DCD transplants have been done for many years with other organs, including the lungs, kidney and liver. The ability to perfuse an organ with oxygenated blood during transportation is crucial because it means the organ can be transported for a greater length of time than when an organ is cooled during transportation. The OCS is already being used for DCD heart transplants in parts of Europe and in Australia. If approved in the United States, it would be a game changer for end-stage heart failure patients.
Life After a Heart Transplant
Frank’s heart transplant was in September 2020, about three months after he was added to the national waiting list. He spent the next six weeks in the hospital, recovering from the surgery and working hard to regain his strength.
“Frank is a reminder of why we do what we do every day,” said Christina Janetzke, Frank’s posttransplant coordinator. “He is always willing to do whatever it takes, and he rehabbed tirelessly after his heart surgery. Even on the difficult days, he was always smiling.”
Frank is now fully recovered and back to his active lifestyle. He and Karen are looking forward to traveling and are planning a trip to Alaska in 2022. Frank is also looking forward to many more of his favorite fishing trips in Canada. He said he couldn’t have asked for a more skilled or supportive care team.
“Froedtert Hospital has an all-star cardiac intensive care unit, advanced heart failure team and heart transplant team,” Frank said. “They gave me a second chance to live.”
*Our experienced specialists in the Comprehensive Heart Failure and Transplant Program offer leading treatments found only at an academic medical center. The heart trial described above is now closed to enrollment.