Desiree and I were invited to the American College of Cardiologists Convention in New Orleans to showcase our life with the HeartMate3 LVAD and advocate for patients, health professionals, and medical organizations.

Advocacy

ACC.19 in New Orleans: Trip Report

June 9, 2019

8 min read

Somaneh Bouba

First Flight with an LVAD

This was my first time traveling by plane since the blood pump was implanted in my heart. Going through TSA with the LVAD was a new experience, one we captured on video. It was a milestone moment that symbolized how far I'd come.

A Breakthrough in Data

Remarkably, the two-year survival data of the HeartMate3 were released at the convention, showing a rate that is comparable to that of heart transplantation. This news was a pleasant surprise, and I believe this may be encouraging for the improvement of mechanical circulatory systems.

Reuniting with My Care Team

The special moment for us at the convention came early on the first day when Desiree and I were reunited with three healthcare providers who greatly impacted my life:

Dr. Dieye Ousmane, treated my dilated cardiomyopathy in Dakar, Senegal, until June 2016
Dr. Xu Zi-Jian, stabilized me at Sutter Medical Health Center in Sacramento when my heart failure was triggered during the YALI fellowship (June 2016)
Drs. Givertz, Lewis, and Mehra at Brigham & Women's Hospital, part of the team that implanted my LVAD and continues to follow my care since September 2016

"Going to the convention was a great experience. We've learned so much and met many inspirational patients and great professionals. The conversations were all so meaningful and we appreciated the interest many have shown in our story."

Beyond the Convention

We also took some time to discover New Orleans, its food and music. We even went to an NBA game and caught up with a long-time friend, Mansour, whom we hadn't seen in about 10 years since living in South Africa.

The ACC.19 experience reinforced our commitment to patient advocacy and the importance of bringing the patient voice to the forefront of cardiovascular research and innovation.