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UNOS Region 5 Collaborative

Join Madelyn on her incredible journey through three open heart surgeries and a life-saving heart transplant. Witness the transformation as she receives a new heart and thrives with increased energy and smiles. Learn about the challenges and triumphs of life after transplant, including the importance of regular monitoring and surveillance. Discover how technology like gene expression profiling and donor-derived cell-free DNA analysis is improving outcomes for transplant patients like Madelyn.

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UNOS Region 5 Collaborative

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  1. UNOS Region 5 Collaborative Greg Quinn - CareDx August 21, 2019

  2. Madelyn the Miracle The Transplant Journey

  3. Madelyn was born with a “A Hole in Her Heart” • Madelyn was born with a Ventricular Septal Defect (VSD), a medium-sized murmur • “A Hole in her Heart” • Some of the side effects were: • Failure to thrive • Lack of energy • Inadequate eating • Very rapid breathing

  4. On the outside Madelyn was a very happy baby

  5. Madelyn’s Three Open Heart Surgeries November 23, 2013 April 23, 2013 December 3, 2013 Closed the “Hole” Developed Heart Block Pacemaker implanted Left Ventricle Failed Bi-Ventricular Pacemaker

  6. Heart Transplant Heart Transplant Waiting List November 23rd, 2014 The doctors told us that her heart had worsened and there was nothing else they could do to fix her heart

  7. The CALL We received THE CALL from LCPH they had the perfect match for Madelyn! They took her into surgery at 2:30am on March 5th, 2015 March 4, 2015 - 10:30pm

  8. Madelyn’s Transplant March 5, 2015 • The Transplant Surgery lasted 10 hours • The new heart was a perfect match

  9. Our New Girl • Perfusion • Big Appetite • Increased Energy • Bigger and Better Smiles Madelyn recovered very quickly We went home 16 days after her surgery She was a completely different little girl

  10. Life After Transplant

  11. Our Normal Biopsy Schedule • Year 1 = 8 Bx • Year 2 = 4 Bx • Years 3-5 = 2 Bx/Yr “One Day at a Time” • Quarterly Center visits • ECCO’s, EKG’s, Blood Draws • 12 medications/day, precisely timed • Frequently sick – suppressed Immune System • Significant increased risk of Cancers, Diabetes etc • Kidney Transplant probable • Average heart will last 15 years

  12. Transplant Games 2018

  13. Better Matching + Better Surveillance = Better Outcomes

  14. Comprehensive Rejection Surveillance Gene Expression Profiling (GEP) Immune Activity Donor-derived Cell-free DNA (dd-cfDNA) Graft Injury P-R-00005 Rev 2 Effective 07.2018

  15. Announcing… iBox Donor-derived Cell-free DNA (dd-cfDNA) Gene Expression Profiling (GEP) Machine learning transplant data analytics Graft Prognosis Immune Activity Graft Injury

  16. Madelyn’s HeartCare Results

  17. Thank You

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