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Patient credits IU Health doctors with diagnosing rare disease, saving her life

Patient credits IU Health doctors with diagnosing rare disease, saving her life

She knew something wasn’t right with her body. Time and time again, Eve Pressnell Moore walked away from doctor visits with a void – no answers. That was until she came to IU Health.

By IU Health Senior Journalist, T.J. Banes, tfender1@iuhealth.org

This month marks 19 years since Eve Pressnell Moore’s mother died. Lavenda Pressnell was 50. Moore’s grandmother died at the age of 62.

Moore, 49, was a sophomore in high school when her grandmother, Charlotte West, passed - old enough to remember that the diagnosis was “liver disease.” The same diagnosis was given to her mother. Yet, so many pieces to that puzzle were missing.

In her 20s, when she too became ill, Moore was on high alert.

“My liver enzymes were high, my blood work was weird. I was never referred to a hepatologist. I had a lot of health issues but no one would listen so after awhile I stopped trying to get medical care,” said Moore.

It was December 2018 after she had been sick for three days that Moore’s husband insisted she go to ER. That visit ultimately changed the course of her life.

She married Scott Moore in June 2003 - the year after her mother died.

Scott Moore was a karaoke DJ at a local restaurant when he first set eyes on his future bride. She came into the restaurant with her mother, who eventually invited Scott to join them at a local burger joint. They exchanged business cards but didn’t date for some time after that first meeting.

“I worked five days a week, 10 hours a day and then went to school two days a week 12 hours. I was focused,” said Eve. Little did she know at the time, Scott was also focused. He had his eyes set on her.

“Her mom was a ball and when they’d come in Eve would be surrounded by a bunch of singing and loud noise, but she would sit there doing her college homework. That was the most impressive thing about her. She didn’t let anything stop her,” said Scott.

That was 23 years ago. Eve marks that as a highlight in her life – she met Scott, completed her college degree and began working at Gateway Services, Inc. a not for profit agency. She fell in love with Scott and the job. She now directs an employment program for adults with disabilities. That same year she was baptized and said the pieces of the puzzle began to come together.

“Leading up to that ER visit she had been sick for a long time but she has such an incredible work ethic that she’d push thought it,” said Scott. “She’d come home and have nothing left. When we got to ER everything came to a screeching halt.”

Emergency room doctors determined the bleeding was caused by blood vessels bursting in her esophagus. She had an emergency surgery to repair her esophagus and learned she had advanced liver disease, but she still did not have a cause. After spending days in ICU, Moore was referred to IU Health where she met Dr. Marco Lacerda, medical director of the adult liver and intestine/multivisceral transplant program. That was in March of 2019. On October 4th she was listed for transplant and 17 days later she received a liver transplant. The cause for her liver failure was diagnosed as “Alpha-1 antitrypsin deficiency.” Those with the diagnosis generally begin developing symptoms between the ages of 20 and 50. Those symptoms can include weight loss, respiratory infections, fatigue and a rapid heartbeat. It’s estimated the disorder affects one in 1,500 to 3,500 people with European ancestry.

“Not only is it rare, it’s rare for three generations in a row to have it,” said Eve. At her worst, Moore’s lung collapsed. She was diagnosed with diabetes, her lower extremities were swollen, and her legs were cramping so severely she couldn’t walk. She had three hospital stays for a total of 30 days.

“I was so miserable. I just wanted a transplant,” said Eve. “By the grace of God I didn’t have to wait long. Dr. Lacerda is one of my top human beings. I have so much admiration for him he is a beautiful being.”

IU Health surgeons Dr. Richard Mangus and Dr. Chandrashekhar Kubal performed her surgery. Before entering the operating room, Moore had one request.

“I wanted a picture of the monster that ruined my life and a picture of my new liver that was saving my life,” said Eve. The doctors obliged.

She named her new liver “Charvenda” after her grandmother, “Charlotte,” and her mother, “Lavenda.”

Now, 21 months since her transplant, Moore says she still has health issues but she is thankful that she is not chronically ill.

“My life doesn’t feel threatened. Because of COVID I stay in my bubble, but I’m not confined to a bed all day,” said Moore. She has found great comfort through her family – including her dad, Jerry Pressnell - her church, and the IU Health Transplant Support Group. The group meets virtually from noon to 1:00 p.m. the first and third Thursdays of each month.

“Scott has been there every step of the way and as much as my friends and family love me, there is no way anyone can understand what I’ve been through unless they’ve been through it too,” said Eve. “Through the support group I have made friends who are pre-transplant and post-transplant. We’ve become friends on Facebook and we are there to answer questions, pray for each other and lift each other up,” said Eve.

She eventually hopes to advocate for those facing liver disease and volunteer with Donate Life Indiana. For now, she is thankful and so is her husband.

“It’s sometimes difficult for her to realize how far she’s come because she’s plowed through so much,” said Scott. “She’s never quite wrapped her mind around all that she went through.”