Living with heart failure
WHF is grateful for the ongoing collaboration with World Heart Day (WHD) supporter and partner, Boehringer Ingelheim and Lilly Alliance, and their nomination of Heart Hero Aistė Štaraitė who shared her story with us.
Young, active, and enjoying her career and life abroad, Aistė Štaraitė had no reason to suspect a heart problem and neither did doctors. But as we learn every day, heart disease knows no boundaries.
In 2016, while in her twenties, Aistė experienced some of the more typical symptoms of cardiovascular trouble: shortness of breath, dizziness, a rapid heart rate and a particularly bad episode awakening from deep sleep, feeling as if her chest would explode. She had always worn a fitness and activity tracker that showed heart rate and the numbers became erratic, even at rest, which was a source of alarm. Feeling ill, Aistė went to the doctor and for weeks, she received different types of medication to relieve the symptoms, but none helped. Finally, tests followed that would reveal a more serious issue. Despite no known family history of heart disease, and not recalling any severe bouts with a virus, she received a diagnosis of “end stage heart failure,” a life-changing shock.
“It isn’t difficult to share my story of heart failure since I want to erase the stigma that young people, especially young females, cannot be sick, because behind ‘looking healthy’ can be a dangerously deadly disease. I see that sharing patient experience makes a positive impact in other people’s lives. My health is the most important thing. Without it, I can’t even make a living and can’t take care of myself or anyone else.”
Aistė refused to take her diagnosis as a predictor of the worst. Medications worked for some time and in 2018, she was fitted with a Left Ventricular Assist Device (LVAD), and in 2021, had a heart transplant. Her greatest determination was to strengthen the power of other patients to steer forward. She became immersed in ways to help patients and families get the facts about heart disease, learn of their treatment options, engage with others—in short, to be their best advocate and stakeholder on their heart journey.
“Many people have the idea that it’s somehow normal, that everyone must have a heart issue at some point in their lives is. When I told people that I live with heart failure, they did not comprehend the seriousness of it and were dismissive. Then when I said I had the LVAD, their reaction became ‘oh, I didn’t know it was that serious.’ Talking about the dangers of tobacco, the importance of getting screened for heart issues, of maintaining physical activity and keeping the risk factors for heart disease at bay– these are things people sometimes don’t want to hear but they are crucial factors and there is such an opportunity to take real and effective prevention measures. Then there’s the mental health aspect– the anxiety, fears, and doubts about the future that are difficult to discuss and because the focus becomes so much on fixing the physical problem.”
Aistė is quick to enumerate patients’ “unmet needs” that are never far from her thoughts and always part of her actions. They include access to care services. For example, often patients must cover long distances to get to the nearest clinic and face many other challenges: often, there is no specialist cardiologist to go to, and innovative diagnostic tools or treatment options are absent. And there is always more to do to increase knowledge among patients, but among clinicians too, about heart conditions and the ways they can manifest. She stresses the need for inclusion: the power of research and clinical trials to improve understanding of symptoms, causes and care will be greater when they reflect the experiences of people of all backgrounds and the reality of diversity.
Today, as President of the Lithuanian Heart Failure Association, she has a direct role in shaping the future of cardiovascular care and emphasizing patients’ voices. With the Global Heart Hub, an alliance of patient organizations, she serves as Heart Failure Development Executive. Their release of “Heart Failure – Your Guide to Your Journey” is a one-stop patient-friendly manual covering key topics on heart failure and guideline-directed care. The emergence of such tools, closer links between clinicians and patients, and the persistence of peers in raising awareness gives hope.
“Since the heart transplant, I need to monitor myself carefully, avoiding any complications if I have an infection. Then there is medication that I take every twelve hours or so. But this is just one aspect. I have a full life and I feel great, as good as I did many years before I was diagnosed, and I have more energy. I’m so aware of having the power to create something, to make a difference and to help generate positive change for all hearts.”
WHF highlights the ‘Heart Heroes’ among us – they are the cardiologists, healthcare professionals, policy-makers, patients and their family and friends battling, treating and beating heart disease. We are honoured to hear and share their stories that spread awareness and hope.
In these personal testimonials, any examples of diagnoses, care, treatment, medical processes, or recommendations are provided independently of WHF’s policy or scientific and technical outputs.