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.
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 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.
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.
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.”
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. 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.
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.
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.”
This article was originally published in Mayo Clinic Magazine.