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New Surgery Offers Hope for Heart Failure Patient
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Cynthia Chauhan works in her sprawling flower garden in Wichita, Kansas, on a summer day, when she notices a vibrant monarch butterfly fluttering near the milkweed. Cynthia realizes only after snapping a photo that the butterfly has a broken wing.
“When he’s busy doing his butterfly thing and you’re observing, you don’t even notice the damage,” she says, reflectively. “You accept it and go on the best you can.”
The butterfly reminds her of her own journey. A retired clinical social worker, Cynthia loves working in her garden, writing poetry, volunteering at Mayo Clinic as a medical research advocate — where she has been a patient for nearly 30 years — and spending time with family and her three dogs and cat. But when she started experiencing severe shortness of breath in 2014, these passions began slipping away.
Daunting Diagnosis
At first, Cynthia thought her difficulty breathing was a symptom of her asthma. She was unable to lie down without her lungs filling with fluid. She sometimes coughed uncontrollably. She did not have the energy to work in her garden and needed to cut back on the time she spent volunteering. Sensing that there was more to the story, Cynthia’s pulmonologist at Mayo Clinic referred her to cardiologist Barry A. Borlaug, M.D.
The diagnosis was not good — Cynthia had stage 3 heart failure with preserved ejection fraction, a type of heart failure in which pressure builds up in the heart chambers, reducing the heart’s reserve capacity to cope with stresses, such as physical activity. It can be caused by the combination of aging, high blood pressure, and metabolic-inflammatory stress put on the heart and blood vessels due to obesity, Dr. Borlaug says.
There is no proven treatment for this condition, which affects millions of people in the United States, especially women over 60. Women with this type of heart failure outnumber men 2 to 1, roughly. “It’s a huge public health problem,” Dr. Borlaug says.
Clinical Trials Journey
When Dr. Borlaug told Cynthia that about half of the people with this disease die within five years, she immediately snapped into problem-solving mode.
“My first reaction was, ‘What do we do?’” Cynthia says. “I see myself as a partner in my care, not a recipient. You need to be in charge of your own care in a meaningful way. What can I do in conjunction with my doctors to make sure I live as well and as long as I can?”
Cynthia asked Dr. Borlaug if there were any clinical trials focused on heart failure with preserved ejection fraction. “He brightened up and said, ‘Are you interested?’” Cynthia says. “I said, ‘You bet I am.’ We started our clinical trial journey together.”
Over the next five years, Cynthia enrolled in any cardiovascular clinical trial Dr. Borlaug was working on that showed promise for helping patients with this type of heart failure.
Learn more about ...
Clinical Trials at Mayo Clinic
Mayo Clinic's commitment to the needs of patients includes conducting medical research with the goal of advancing medicine to help people live longer, healthier lives. Clinical trials bridge the gap between research and patient care to help a medical discovery become a therapy.
Experts at Mayo Clinic conduct thousands of clinical trials every year so patients from around the world have access to critical medical advances that aim to address their challenging health concerns. Mayo Clinic currently has more than 3,000 clinical trials underway to solve the world’s most serious or complex medical conditions.
What is a clinical trial?
A clinical trial is a scientific experiment in which volunteers agree to help answer a question about the safety and effectiveness of a specific medical hypothesis. It could be something to diagnose, prevent or intervene in a disease. Trials may include drugs, gene-based products or those with cellular components such as proteins (biologics), as well as medical devices, procedures or ways to screen for disease.
Clinical trials are generally categorized by phase
Phase 1: Early studies, often called "first in human" studies. Assess safety and how well participants tolerate the medical intervention. Typically involve fewer than 100 participants and lasts only a few months.
Phase 2: Determine intervention is effective for patients with the health condition being studied; look for side effects and how the intervention compares to a placebo. Typically involve more than 100 participants and can last for several months to years.
Phase 3: Confirm results of previous trials in a larger study; compare new to established treatments. Typically involve hundreds or thousands of participants and can take years to complete.
FDA approval and after
Success in a phase 3 study leads to review by the FDA. If approved, the intervention becomes a treatment for patients. Ongoing research monitors the effectiveness of the treatment over time, as it is used by more and more people.
How can I get involved?
Everyone can play a role in clinical trials. Without volunteers who are managing an illness or health problem, and those who are not, this type of research simply would not be possible.
Participate in a clinical trial at Mayo Clinic. By better understanding how to diagnose, treat and prevent diseases or conditions, we help people live longer, healthier lives. Researchers need volunteers for a broad range of clinical studies. Find a clinical study.
Connect with us. Eligibility requirements vary for each study and determine the criteria for participation. Connect with the study staff directly to get the best answers to your questions. They can provide specific information regarding eligibility and possible participation. Contact information is found in each study listing.
Join a national research volunteer registry. Health research changes people’s lives every day, but many studies fade away because there are not enough volunteers. Researchers need both healthy people and those with all types of conditions. Funded by the National Institutes of Health, ResearchMatch is a first-of-its-kind registry that connects research volunteers with researchers across the country. Sign up at ResearchMatch.org.
A Long History
Cynthia trusts the physicians and researchers at Mayo Clinic so much, in part, because of her long history with the institution. Long before she was diagnosed with heart failure, she had first decided to seek care at Mayo in the early 1990s for a skin condition that had been misdiagnosed elsewhere. She was amazed to walk out of her first dermatology visit with an accurate diagnosis and treatment plan.
Over the last three decades, Cynthia has traveled 600 miles from Kansas to Mayo Clinic in Rochester, Minnesota, for her medical care. Her care team has treated her for a myriad of serious, complex conditions, including breast cancer, kidney cancer and kidney failure. She has also been seen by experts in endocrinology for weight loss; ophthalmology for glaucoma; rheumatology for osteoarthritis, inflammatory arthritis and gout; pulmonology for reactive airway disease and asthma; and pain medicine to manage her chronic pain.
“When you walk into Mayo, the atmosphere is very positive and uplifting,” she says. “It’s a comforting place to be.”
A Promising Solution
By the spring of 2019, Cynthia had participated in six cardiovascular clinical trials with Dr. Borlaug.
He was working on a new study and believed she would be a perfect fit. The small phase 1 trial focused on testing a new, Mayo-invented surgery called a pericardiotomy. Dr. Borlaug’s hypothesis was that surgically opening up the pericardium — the outer layer of the heart — could relieve some of the pressure in the heart, giving it room to fill with blood better prior to pumping. It would be the first attempt in human volunteers to address heart failure with preserved ejection fraction.
For Cynthia, it was an easy decision. Even if she did not benefit in the long run, she would be helping future patients by participating in cardiovascular research.
“I’ll do anything to keep my heart as healthy as I can and help anyone with this disease,” she says. “It’s really exciting.”
Cynthia was one of four women who participated in the study, which was first made possible by a gift from a benefactor. Eventually, more funding was secured through grants and the Mayo Clinic Transforming Clinical Practice award. The procedure involved deflating the left lung and drilling a hole near the rib cage so the pericardium could be opened, removing its compressive effects on the heart. Then, the lung was reinflated.
The study’s first phase is complete, Dr. Borlaug says. Now he and the research team are looking at whether it benefited the participants. One indicator they are looking for is improved exercise capacity among the participants. Another is fewer and less severe symptoms.
Dr. Borlaug and his team are working to secure funding for the second phase of the study. Also, they’re pursuing FDA approval for a Mayo Clinic-invented device that will avoid the need to deflate the lung.
Cup Half Full
Today, more than one year after her procedure, Cynthia feels like she has her life back. She was able to scale back some of the medications she takes for her heart.
“I can lie down flat without my lungs filling up with fluid,” she says. “I can bend over and pull weeds without almost losing consciousness. I’m doing better. The reason is the quality of care and intervention at Mayo.”
Dr. Borlaug is able to monitor the pressures in Cynthia’s heart from Minnesota through a device that was implanted in her pulmonary artery before her pericardiotomy procedure, as part of a separate clinical trial.
“That, more than anything, has given me peace of mind,” Cynthia says.
To manage and monitor her heart failure and kidney failure, she travels to Mayo Clinic for in-person appointments with her doctors every six weeks. She also receives digital care.
Due to the COVID-19 pandemic, she has not been able to volunteer at Mayo in person for the last few months, but that has not slowed her work as a patient research advocate. So far this year, she has co-written six articles with researchers to share her experiences with cancer, heart failure and participating in clinical trials. It is her goal in life to “bring the patient voice to the research table,” to help the researchers who develop new treatments for patients like her.
Beyond being a volunteer and a patient advocate, Cynthia has also generously given to Mayo Clinic in gratitude for the care she’s received. Mayo Clinic honors Cynthia by recognizing her as a Major Benefactor.
Like the butterfly with the broken wing, Cynthia is able to do all of the hobbies she loves again, despite the medical challenges she has faced.
“I take great pleasure in being alive and seeing that my cup is half full.”
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