Kate’s complex journey reaches a new chapter with a new heart

Kate Markey is an expert at beating the odds. Although only in her early-50s, Kate is successfully managing the aftermath of cardiac amyloid light chain (AL) amyloidosis, having survived congestive heart failure, chemotherapy, immunotherapy, a stem cell transplant and a heart transplant, all related to the condition. Her story illustrates why the coordinated, multidisciplinary care offered at Inova Schar Heart and Vascular is so important. Kate is living proof of its lifesaving impact.

In fall 2020, Kate began to experience shortness of breath, fatigue, leg swelling and abdominal bloating, which she first attributed to the effects of a hectic schedule and prior injury. Busy with children in grade school, high school and college, her life felt like a blur some days. But by summer 2021, she could barely garden without feeling out of breath.

Her symptoms were the result of congestive heart failure caused by AL amyloidosis, which was diagnosed by Jamie Kennedy, MD, an advanced heart failure and transplant physician at Inova. AL amyloidosis is a rare plasma cell disease that causes the body to produce an excess of light chain proteins, which build up in the body and cause organ dysfunction and failure.

The light chain buildup had already damaged Kate’s heart, but in order to prevent the AL amyloidosis from causing further damage to her heart and to her other organs, Kate underwent chemotherapy, immunotherapy and a stem cell transplant to replace the plasma cells in her bone marrow with correctly functioning plasma cells. Ana Barac, MD, PhD, Inova Schar Cancer and Inova Schar Heart and Vascular D’Aniello Chair, Cardio-Oncology and part of Inova’s amyloidosis care team, helped oversee Kate’s care from a cardio-oncology perspective.

The stem cell transplant halted further buildup of proteins, but unfortunately, the damage already done to Kate’s heart was severe and permanent. “She continued to have worsening symptoms even after her stem cell transplant in December 2021, and by early fall 2022, she had begun to show signs of decompensated heart failure,” said Dr. Kennedy.

After her stem cell transplant, Kate also began to battle recurrent pneumonia infections. Inova’s advanced heart failure team asked advanced lung disease and transplant physician Vikramjit Khangoora, MD, to consult on Kate’s case. He identified a rare form of graft-versus-host disease, resulting from the stem cell transplant, that was affecting her lungs.

By fall 2022, Kate’s AL amyloidosis and lung disease were both under control, but her heart failure symptoms were worsening. It was time to begin preparing Kate for a heart transplant. “The support Inova provided regarding heart transplant was so thorough. It gave me confidence,” Kate said. “I always knew I could call them with any worrying symptoms or questions. Facing transplant is a lot, both for the patient and the patient’s family, but at Inova I always felt that we were not alone in this.”

Moving toward a new heart

Although she was relatively young and had previously been healthy and active, Kate now had a compromised immune system and weakened lungs. In addition, it was impossible to know how much light chain buildup was present in other organs and what damage might have been done by the AL amyloidosis.

“Not all centers would have considered her a viable candidate for transplant,” Dr. Kennedy said. Fortunately for Kate, the strength and experience of Inova’s advanced heart failure and transplant program enables the team to successfully manage patients with higher-risk features, like Kate.Dr. Kennedy noted, “Our seamless access to excellent colleagues in other specialties helps make it possible for us to care for these highly complex patients.”

On December 21, 2022, Kate received a heart transplant and faced her next challenge: balancing the need to prevent her body from rejecting her new heart against the risk of infection, which could result in her lung disease gaining a foothold. Inova’s transplant team, which includes advanced heart failure and transplant cardiologists, a transplant surgeon, nurses, advanced practice providers, social workers, pharmacists, and others, worked with Inova’s advanced lung disease, infectious disease and hematology specialists to coordinate her care.

After transplant, Kate faced additional complications as she and her medical team worked to balance infection treatment with the careful management of antirejection therapeutics, all while rebuilding her immune system for long-term recovery. “Transplant is not a magic wand. It’s a year of recovery,” Dr. Kennedy noted. “Fortunately, she has done very well and got those complications under control.”

“Jamie Kennedy and I worked closely together to adjust Kate’s immunosuppression and her treatment strategy post-operatively to allow us to mitigate her risk of infection while continuing to adequately prevent rejection from a heart standpoint and prevent recurrence of disease from a lung standpoint,” Dr. Khangoora said.

Today, Kate is in a much better place than she was one year ago. She has completed cardiac rehabilitation and is reclaiming aspects of her life that had fallen by the wayside when she got sick. She is finding joy in being able to make plans for the future.

The medical excellence of the teams at Inova Schar Heart and Vascular stand out, according to Kate. “All the providers are so intelligent and so communicative, working as a team with nurses and others in partnership with their patients to provide excellent care,” she said. “I have the confidence of knowing my Inova team is always by my side.”

Learn more about Inova’s Amyloidosis Program