Ava's Heart Heroes Ball

"Ava's Heart is the only non-profit organization in the United States that provides extensive support for transplant patients and their families, both pre and post lifesaving organ transplant. Ava's Heart founder, Ava Kaufman, is a heart transplant recipient herself."

Our transplant family and AVA KAUFMAN, Founder of Ava's Heart Heroes Ball

Ava's Heart Heroes Ball is a non-profit organization that supports transplant families with expenses incurred during hospitalizations including transportation, places to sleep and freshen up. Often times, families travel long distances to specialty hospitals (far and few between) that provide the proper care. Unfortunately, family members do not have a place to stay over the weeks-months their loved ones are hospitalized.  Learning about this non-profit has been a heart warming discovery and I hope every transplant family can become aware of the services. 

STEVE WILLIAMS, TAH & heart transplant patient, with Syncardia CEO, MICHAEL GARIPPA

Syncardia's CEO, Michael Garippa, was honored a heroes award by Ava Kaufman at her Heart Heroes Ball this past Thursday in Hollywood, CA. Our family was invited to join Syncardia's table. Unfortunately, my father has been suffering from mobility issues so only my sister Jeanne and I attended the event.  We were granted additional invites so of course we extended the invites to our transplant family and their spouses. One of our favorite ICU nurses from Cedars Sinai also attended the event.  It was great seeing everyone, catching up and talking about on going struggles post transplant. I was sad my dad could not attend the event; hopefully next year since the CEO of Syncardia invited us to join him again. 

Everyone asked how our father was doing and I was honest about his immobility due to weakness in the legs. Another patient shared his struggling to walk post transplant, saying he was "constantly falling on my face". He told us he was able to gain strength back once he got back on an anti-rejection medication, Prednisone. His symptoms were very similar to my dad's current issues so we've since put Dad back on the anti-rejection meds to see if he gains strength. Every one is unique and our bodies respond in different ways. We can only hope he will get better from here. (Note: In August, I took 4 weeks off to help my family and take Dad to his appointments, chiropractor therapy, acupuncture and mainly to assist with physical therapy at home. I considered myself a drill sergeant and he was my soldier. After weeks of blood, sweat and tears, the results were very minimal and he got worse after the 4th week. I knew something else had to be contributing to his weakness. Stay tuned for updates.) 

With our transplant family (JEANNE, me, LANCE WHITE, JOHNNY LEMUCCI, CAROLINE LEMUCCI)

With Cedars Sinai ICU Nurse, KATHY ARABIA

As a retired entertainment reporter for E! Entertainment, Us Weekly Magazine, and OK! Magazine, I've had my fair share of invitations to extravagant Hollywood parties and non-profit events. However, Ava's Heart Heroes Ball was THE MOST memorable and touching event I have ever attended. We got to hear stories from transplant patients, family members of donors, doctors, and honorees who have all been touched by transplant. Memorable monologues by Melora Hardin, Cady Zuckerman, and Joely Fisher and performances by Renee Lamontagne, Dani Hagan, Kerry King, Art Santora, Peter Michael Escoveda, Jacob Jonas The Company and Maria Howell + Tommy Coster. There's nothing like coming together to celebrate the gift of life thanks to all the donors and donor families in our community. Thank you Ava for all you do for the transplant & donor community. 

LANCE WHITE, TAH & heart transplant patient, gets interviewed by KARLA GORDY BRISTOL, CEO of Bristol Entertainment. 

One Year Later... Cedars Sinai's Patient Picnic

All smiles with Me, Dad and Dr. Lee

Today was Cedars Sinai's Annual Heart & Lung Transplant Patient Picnic.

Last month on June 25, 2017, marked one year since my father's heart transplant yet he is almost 95% immobile due to a combination of neuropathy, muscle & spine function/strength, and medication.   

We knew Dad's inability to walk would be a challenge for today's event at the park, but showing up was important for our family to be present and celebrate how far everyone on this journey has come. 

As we pushed Dad up the dirt and grass hill on his wheelchair, the gradual incline made it harder to maneuver. Two other family members saw our struggle and kindly offered their help. Thanks to their support, we got to the top where everyone had gathered.

We were reunited with other TAH (Total Artificial Heart) patients we had met at Cedars Sinai including Steve Williams, Johnny Lemucci and Lance White (all whom are back in the work force, living their best lives). 

Steve Williams said getting back to work has been a new training process in itself; he needed to recondition his mind and body to get up for work everyday after years of transplant recovery. 

Surrounding ourselves with our transplant families was uplifting and reminiscent of the obstacles we had all overcome. It was a reminder to be thankful we got to this point and no longer need to spend our lives at the hospital. 

Dad still has a long journey ahead but our family will continue to support him and do our best to get him to recovery. 

As the Cedars Sinai staff and patients hurried off to the fields to play a friendly game of baseball, our family stayed behind due to Dad's immobility. We finished up lunch, connected with a few friends and staff members then called it a day.

As we got into the car, I said to Dad, "Lets work hard this year so you can participate next year'.

Our family reunited with Steve Williams (back), a former TAH patient, our Angel on Earth, currently back in the work force

Dad with Cedars Sinai staff members Dr. Kobashigawa (left), Dr. Lee (right) and Steve Williams, fellow TAH patient (back)

Reunited with TAH patients Steve Williams (left) and Lace White (right)

Dr. Kobashigawa of Cedars Sinai welcome the patients and families