As you may know, Sophia
had her first heart transplant at 5 months old.
This was an incredible gift, and she was "doing well" for 11+
years with her donor heart. Then, at her annual cardiac catheterization and
heart biopsy procedure on April 11th, 2022, our family was shocked
to learn she was experiencing a severe form of organ rejection called Cardiac
Allograph Vasculopathy, or CAV. She was
hospitalized immediately due to the severity of her rejection. She needed another heart transplant for a
chance at survival as there are no other reasonable interventions to fix her donor
heart. Fortunately, Sophia was re-transplanted on April 28th and has
been progressing positively for the first few months—recognizing her journey to
keep this donor heart healthy and honor her donor has just begun!
God Bless the donor and family!
WHAT IS CAV?
Cardiac Allograph Vasculopathy
is a severe form of organ rejection and is a leading cause of why heart
transplants are not a lifetime solution. CAV is a known and all too prominent
risk for heart transplant recipients. At this time, the only long-term
intervention is re-transplantation. Unfortunately, less than 1% of transplanted
children will receive a second heart transplant. So, we have to find better detection
solutions for CAV. We are SOOOOOOOOO fortunate and want to help
fund research and innovations that will find better solutions to increase the
longevity of pediatric heart transplants.
(Source: CAV Current Review and
Future Research Directions, 2021) The short-term survival after heart
transplantation has improved considerably in recent decades with 1-year
post-transplant survival rates in the current era exceeding 85% worldwide.
However, despite progress in immunosuppression, surgical techniques, and
patient care, the survival beyond 1 year after transplantation has remained
relatively unchanged with a median survival of 11.9 years from 1982 to 1991 and
14.8 years from 2002 to 2009. CAV remains the leading long-term cause of death
and re-transplantation following heart transplantation.
WHAT IS THE GAP?
Currently, experts are still learning more about CAV: 1) The
CAUSES for its development, 2) HOW to slow its progression, and, most
importantly, 3) HOW to detect it before too much damage is done to the donor
heart. Progress and ideas are being vetted but more needs to be done! Many of
the insights gained from cardiac transplantation may be applicable to other
transplanted organs and to immune-mediated diseases.
Please join us in our CHALLENGE TO CONQUER CAV.
Renee and I, along with family, friends and
community supporters, are coming together to support innovative research to
CONQUER CAV, and Enduring Hearts makes it a priority to fund specific research
to do such! Your support will go directly to fund an innovative research
project to prevent or diagnose CAV much earlier, such as a novel diagnostic
tool designed to help doctors detect CAV much earlier. This tool is
non-invasive and safer for children. The
hope is that early detection can lead to earlier treatments and much longer
Sophia is a prime example of receiving two miracles in her
short lifetime. We need to be able to solve CAV for others and reduce the need
for re-transplantation! We ask for your support to achieve our fundraising
goal of $10,000 by September 30, 2022 to help us fund research to make positive progress. Please join us!
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