Mel’s Heart Journey

       I met with my Cardiologist for a follow-up from the cardiac catheterization I had a few weeks ago. We began the appointment with the usuals: ECHO, EKG, BP, and O2 check. We talked about being referred to the Heart Failure Specialist through Maine Medical Center and contacting the transplant team in Boston. Taking into account the worsening symptoms and hemodynamics, we discussed referral to the heart failure and transplant team in Boston.       The family and I are in agreement that exploring this option makes sense at this point. We talked about the many factors that go into determining transplant candidacy, and my complex underlying anatomy may complicate the logistics of a transplant, as well as the collateral burden. We also discussed that some centers will opt for combined heart and liver transplants in those with Fontan physiology. We are aware that I may not be a transplant candidate due to my abnormal physiology.     ...

       On April 9, 2025, I arrived at Maine Medical Center in Portland for my routine cardiac catheterization. My last procedure was in 2017, and my Fontan procedure had been stable, so nothing needed to be done or corrected.      As we prepared for the procedure, everything went as planned. It did not take long, but the results were not what we had hoped for: my Fontan was failing. The pressure in the Fontan was high, and when that happened, collateral veins formed to direct oxygen into a dead-end pathway. This results in less oxygen being delivered to the body, significantly affecting my quality of life.      I was informed that I had a large network of collateral veins in my left lung, resembling a bird's nest. Normally, we would go in to stent and coil off these collateral veins, But this time it was deemed too risky, especially given the high pressures in my Fontan.      While the news wasn’t a complete shock, I had s...

Hi there, my name is Melinda! Welcome to my blog. Here you will find my upcoming health journey and how I am navigating life with heart failure. About me: I was born with TAPVR (Total anomalous pulmonary venous return), which is a rare congenital heart defect that occurs when the pulmonary veins do not connect properly to the heart. My condition also consists of HRHS (Hypoplastic Right Heart Syndrome), which is also a rare congenital heart defect where the right side of the heart is underdeveloped. This can cause issues with the tricuspid valve, right ventricle, and or pulmonary valve. Several open-heart surgeries and cardiac catheterizations were done throughout childhood (1994-2017) for correction and revision.  The corrective surgery I have had is called a FONTAN procedure. The Fontan procedure is a type of heart surgery used to treat children born with complex congenital heart defects, especially those where only one functional ventricle is available to pump blood (like hypopla...

  Welcome to My Journey If you're reading this, it means you're part of my circle—my family, friends, and people. This space is where I’ll be sharing updates about my future heart transplant journey: the ups, the downs, and everything in between. There’s a road ahead filled with procedures, recovery, and hopefully much healing. But this blog isn’t just about hospitals and heartbeats—it's also about living. I’ll sprinkle in moments from my bucket list, dreams I still plan to chase, and the places I hope to see (with a new heart beating strongly inside me). Thanks for walking this path with me. It means more than you know. -Mel