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PFAC Member Spotlight: Rhonda G. Moore

PFAC member since July 2014

What led you to become a member of the UAB Medicine Patient & Family Advisory Council (PFAC)?

In May 2011, my husband Robert Moore had a severe burn accident at work and had to be transferred from DCH Regional Medical Center to UAB Hospital’s Trauma and Burn Intensive Care Unit. Robert had third-degree chemical and hot water burns to his lower legs. He underwent two surgeries, including skin grafts. During this time, I began to transform into the passionate advocate I am today. Because of the severity of his injuries, my husband required months of wound care and rehabilitation. I was not only his caregiver but also his advocate for making sure all of his recovery needs were met.

It was a long year, but by December 2012, Robert was released from treatment. And though my husband had recovered from his injuries, he would have the scars to remind him for the rest of his life. Not a quitter, Robert fought his way back to a “new normal.” I gained knowledge from the experience that would later prove to be beneficial. My advocate muscle was being strengthened.

With hope that 2013 would prove to be a better year, on January 3, 2013, I developed my second case of Bell’s palsy on the left side of my face. It took six months to recover, but that was better than my first episode, which required two years of therapy to recover 75 percent. During those years we learned to think outside the box. I was one of the first patients that Spain Rehab treated with severe Bell’s palsy. We worked with Occupational and Speech Therapy as a team to find the best course of treatment for me. That’s when the seed was planted and I realized the importance of playing an active role in your health care.

I was thankful for the foundation I had established during those prior illnesses/injuries. That’s because on Nov. 18, 2013, Robert was placed on a “last resort treatment” called ECMO (extracorporeal membrane oxygenation) at UAB Hospital, and I needed all the strength and knowledge I had to help me navigate the scariest time of our lives. On a ventilator fighting for his life after contracting type A flu, Robert had both viral and bacterial pneumonia and was septic. He also Robert developed ARDS (acute respiratory distress syndrome) and was given a less than 50 percent chance of survival when he arrived. The weeks that followed were shocking. Robert spent 22 days on the ECMO heart and lung bypass machine.

His was suffering from kidney failure, liver shock, pleural edema, and encephalopathy. He was unconscious for three weeks, and he lost 50 pounds and all of his muscle mass. He was so yellow from jaundice that even his tears were yellow. At this point, he was given a less than 30 percent chance of survival. Robert was wasting away, but we did not give up, and neither did UAB. On Dec. 10, 2013, Robert was taken off the ECMO machine and began his road to recovery. He spent seven more weeks in intensive care units and 10 days in Spain Rehab, followed by months of recovery at home. It a traumatic experience for both of us but also the most amazing recovery that most people probably will never experience in their lifetime.

We took six months to reflect on our experience, and then we began our journey to healing. We reached out to UAB Hospital and the individuals who had welcomed me as part of the team to make Robert’s survival possible. We personally thanked many and wrote letters as a whole to UAB Hospital. It was during this journey that I was informed about the PFAC and chose to join, in the hope that I could inspire other patients, families, staff, and administrators. I strive to do this not only by sharing our story but also by sharing experiences with others, because with each experience, I grow to be a stronger advocate.

 

What did you hope to accomplish by joining the PFAC, and do you feel that you are achieving those objectives?

I could not forget all of the faces I passed each day in the hospital. Like me, their lives had been put on pause or stopped altogether, and some had to learn to begin again without someone they held dear. I wanted to use what I had learned to help those who would come after us in the hope that it might help another family have its “miracle” too. We wanted to enlighten the staff and doctors on the perspective of the patients’ and families’ points of view – to show that what you do or say really matters and how it can encourage or discourage a patient or family member.

Sometimes hope is all you have to hold on to in that moment – not false hope, but knowing that someone is in the fight with you and that you are not alone. To be able to recognize how fragile family members are when they are trying to care and advocate for their loved ones. To empower them with the knowledge and support to keep pushing ahead toward a road of recovery and healing. I also wanted to bring attention to the importance of following basic protocols in preventing infection and transmission. I believe that we are helping bring awareness by sharing our story with different departments and forums.

 

What are some projects or accomplishments on the PFAC that you are most proud of?

I am very proud of UAB Medicine for having the PFAC. It shows that they care about their patients and their families. They want to hear both the good and the bad experiences so that they can continue to grow and improve. There is nothing more valuable than listening to someone share their own experience. It brings a reality and humanness that you cannot learn in a book. You cannot teach “heart” – that comes from within, and when shared with others, it can break down barriers.

My hope is that we can continue to open up more opportunities for our Speakers Bureau. Many of our members have shared their stories with different departments and new-hire orientation groups. Members also have shared their stories during Patient Experience Week, administrative classes, Leadership Forum, and training days. This is just one of many things I am proud of that the PFAC provides. Many departments and project leaders seek feedback from the council about everything from renovations and new facilities to patient waiting rooms and other small details. The council provides valuable insight to those looking for a patient or family perspective on billing forms, as well as ways of communicating more effectively to the patients and families in a multitude of ways, such as signage, phone apps, educational videos, and more.

 

What additional information would you like others to know about the PFAC and UAB Medicine?

I would like to end by saying how blessed we all are to have a hospital like UAB in our community! The level of skill among the staff and the innovative technology at UAB are amazing. The PFAC is just one of the ways that UAB meets and exceeds expectations in the health care field.