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Share Your Story

Recent Patient Stories

  • Morphine, Not Water: Heart Surgery and Hope in a Global Pandemic
    You’d never guess that Thomas Muellner, a writer, musician, rec soccer player, and world traveler is a three times heart surgery survivor. Thomas was born with a rare heart condition called Tetralogy of Fallot (TOF) and had heart surgery twice while growing up. His most recent surgery was during the… Read more »
  • Operation Backward Blood
    I am a survivor of heart valve disease. My journey began at a routine physical when my primary care physician detected a heart murmur. Upon being referred to a specialist, I was told that I had Mitral Valve Prolapse. I was given the option of taking beta blockers that would… Read more »
  • Adele and the Power of Finding Others Like Her
    My name is Adele and I was born and raised in China until the age of 9.  According to my adoption paper, a police man found me on the street in a very bad condition: my skin was blue/purple looking, had hard time breathing and was not responsive.  They brought… Read more »
  • A Health Care Professional Advocating for Patients
    I’m a structural heart physician assistant and I advocate every day for patients who have valve disease by listening to their concerns and helping them make the best decision about their care. I love working with our patient population and seeing how great they feel after their procedure. I also… Read more »
  • Alaina Encourages All Women to Listen to Their Hearts
    I followed my heart. After numerous failed trips the to ER and my primary care physician that fell on deaf ears, I took my heart into my own hands and made an appointment with a cardiologist. She listened to ME! I know my own body and I knew something was… Read more »
  • Mitral Valve Regurgitation Diagnosis at 31
    February 11th of 2020, just before my 30th Valentine’s Birthday, I was diagnosed with MVR (Mitral Valve Regurgitation). This a form of HVD (Heart Valve Disease) that is likely congenital and cannot be reversed. After years of frustration, from medical testing that resulted in misdiagnosis after misdiagnosis, I finally learned… Read more »
  • Shannon’s Bicuspid Aortic Valve
    Hello my name is Shannon on Feb 14, 2016 I found out I have a Bicuspid aortic valve and ascending aortic aneurysm 4.6cm.  I also found out this is from being born with 22qdeletion.  I was 36 years old at the time. I’m now currently watching my heart yearly. I… Read more »
  • Richard’s Story
    In 1980 at the age of 32 I was diagnosed with a Bicuspid Aortic Valve which needed replacing, this was before computers so checking things out meant libraries. In July of 1981 I had surgery for a mechanical valve which I still have today at Age 71.   Read more »
  • Every Scar Tells a Story
    Hello, I am Philip Warlow from Llanelli in Wales, reaching 2020 was an achievement in itself because of the journey through 2018 and 2019 had been fraught with obstacles that I thought I would never overcome but I have arrived at my destination and I am lucky to able to… Read more »
  • Samuel’s Experience with a Heart Attack Teaches Us How Important it is to Listen to Our Hearts
    My name is Sam and I worked as a hospital administrator/manager for more than 25 years. I have seen my share of heart trauma patients and responded to countless Code Blues. I never thought that I will one day be a heart patient myself. I considered myself a healthy individual… Read more »

Read more stories on LivingWithValveDisease.org