Lori

Age at interview: 49

Lori is a 49-year-old woman who was born with a heart condition and with heart failure. She lived with heart failure for the first 9 years of her life until her first heart surgery, which brought Lori out of heart failure and she was able to live her life normally. When she was 24 years old, Lori started feeling tired all the time, lost weight, was not eating, and could sleep all day. She told her doctors at the time that something was wrong but the doctors said that there was no change in her echo and she should be feeling fine. Thinking that the doctors knew best, she did not pursue it any further. However, it worsened to the point where she stopped going to school, stopped working, and just couldn’t move. Lori went back to her doctor but yet again, the doctor dismissed her concerns and told her it was due to anxiety; owing to being a woman, being hormonal, stressed from school, and the grief of losing her mother. Lori refused that diagnosis and demanded a heart cath. Immediately after the heart cath, the doctors informed Lori that she needed another heart surgery. After this, she was in and out of heart failure due to her arrhythmias. More surgeries followed, including 8 defibrillators, a pace maker, and a chronic asynchronization therapy device for end stage heart failure. Lori shares her experiences of being a woman living with heart failure and the importance of meeting other women who have heart failure who can become allies and friends in this journey. Lori passed away in April 2024; our project team acknowledges and is grateful for her legacy and shared experiences in contributing to this project.

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More content

• Stigma & Gender Bias – Lori
  Lori talks about her doctor dismissing her symptoms as just part of being a woman.
• Coping Strategies – Lori
  Lori talks about how learning to pace activity can be trial and error.
• Care Delivery – Lori
  Lori says the worst part of navigating the system is going to the emergency.
• Impact on Work, School, Finances – Lori
  Lori says 'work was my community'.
• Impact on Work, School, Finances – Lori
  Lori says employers can be unsupportive because people with HF may need flexibility.
• Impact on Work, School, Finances – Lori
  Lori asks what are people supposed to live on?
• Surgery and Devices – Lori
  Lori eventually needed a valve replacement after two repairs.
• Surgery and Devices – Lori
  Lori describes her surgical journey.
• Advice for Healthcare Providers – Lori
  Lori describes the need for due diligence on the part of a healthcare provider.
• Advice for Women Experiencing Heart Failure – Lori
  Lori describes the importance of monitoring symptoms.