First her heart failed, then her kidneys. How this Philly woman fought back

Betty Bell, center, walks through the hallway during a recent visit to the Einstein Center for Advanced Heart Failure, with Program Coordinator Tim Robbins and her son Kevin Bell.

For Betty Bell’s family, it’s all about the milestones.

The 74-year-old, who suffers from cardio-renal disease, diabetes, and high blood pressure, has had congestive heart issues for 18 years.

“We all wondered, would she be around for my 50th birthday, for the birth of my first grandchild, for the high school graduation of her first great-granddaughter?” asks her son Kevin Bell.

Three years ago, when Bell’s heart had grown progressively worse, “there wasn’t much they could do,” she says. “I was tired all the time, and my face was swollen up so bad, fluid running out of my legs, my whole body was just swollen up with fluid.”

To combat her heart failure, Bell underwent an operation to have a left ventricular device (LVAD) — a battery operated implant that helps the left ventricle pump blood to the body — inserted into her heart at Einstein Medical Center.

The device, used in patients who are not candidates for heart transplants, possibly saved Bell’s life, but came along with an additional complication: renal disease.

While the left ventricle was helped, the right was not, and Bell developed a disease of the right ventricle, where blood backs up, which can start congestion of the kidneys and weaken kidney function.

Cardio-renal disease is an understudied phenomenon, experts say, yet it’s common in patients whose heart or kidney function has been compromised.

According to the United States Renal Data System, in patients over age 65 with chronic kidney disease, almost 70 percent have cardiovascular disease. Of the $3 billion growth in Medicare spending from 2013-2014, two-thirds was driven by a combination of heart failure, chronic kidney disease, and diabetes.

Along with complications from LVAD implants, cirrhosis of the liver, sepsis and pre-eclampsia are among the diseases that can spark the condition. Cardio-renal problems can also be complications of diabetes, high blood pressure, sleep apnea, obesity, and metabolic syndrome.

Camera icon CHARLES FOX / Staff Photographer
Betty Bell talks with doctors Behnam Bozorgnia, left, and Janani Rangaswami on a recent visit to the Einstein Center for Advanced Heart Failure.

“We know that with heart failure about a quarter of patients also have kidney disease and that kidney failure is right behind heart failure,” says Behnam Bozorgnia, director of Advanced Heart Failure at Einstein and Bell’s cardiologist.

“It’s helpful to learn where the disease originates and how it has become progressive because that really helps tailor therapy,” says Janani Rangaswami, associate program director in the department of medicine at Einstein, and Bell’s nephrologist. “But we don’t always know what comes first, cardiovascular or kidney disease.”

Rangaswami recently edited a medical textbook on the topic, Cardio-Nephrology: Confluence of the Heart and Kidney in Clinical Practice.

No matter how it originates, the symptoms of cardio-renal disease are the same, says Rangaswami. They include vitamin D deficiency, fatigue, frequent hospitalization, malnutrition, fluid-control issues, anemia, and such psychosocial issues as depression, related to the stress of dealing with a major disease. Another potential stressor: Patients such as Bell also need to follow a restricted diet that limits potassium, which can accumulate in people with kidney disease.

Camera icon CHARLES FOX / Staff Photographer
Janani Rangaswami speaks about the care of Betty Bell at the Einstein Center for Advanced Heart Failure.

“Heart disease with kidney disease complicates disease management,” says Rangaswami, who notes that these patients require a team approach and care adapted to specific circumstances.

“We can’t just do some vanilla treatment with these people and say, this is how we treat this,” she says.

”You have to individualize treatment for people with these problems. It’s almost a unique problem that requires its own data, its own research, and its own outcome measures.”

Early detection can help. But for low-income patients, who may lack access to primary care and appropriate screening tests, this can prove a problem.

Despite the challenges, Rangaswami is optimistic. She notes that specialists in cardiology and nephrology are increasingly working together, and points to the newly formed Cardio-Renal Society of America that encourages internists to intervene early, especially in cases of combination heart and kidney disease in younger patients.

In addition, she hopes that Medicare’s gradual transformation to a payment model based on value of care, rather than the volume of care that traditionally has been rewarded, may provide a chance to improve and increase collaboration between the two specialties.

“If we don’t make this a cardio-renal collaborative, we’re missing an opportunity,” she says.

Following her LVAD operation, Bell returned to her Philadelphia neighborhood to live with her sister and daughter. Her son lives nearby, as does her niece. She recently attended a boisterous family reunion, and spent two days in Atlantic City.

“My health is doing good, and I’m getting around,” she says.

As for those milestones, she’s looking forward to a new one: the eventual graduation of her great-granddaughter from Temple University with a business degree.

“I will be there,” says Bell with a smile. “The way I feel now, I will watch her walk down the aisle.”