BYU senior has lived through three heart transplants, asking for more to check donor box

April 6, 2018 GMT

Across Utah County, there are people waiting for donations, whether it is a needed organ, bone marrow or blood that will save their lives. Others have given these life-saving donations to complete strangers. Gift of Life highlights those involved in the medical donation process.

Lauren Holbrook was 12 when she had the sudden, overwhelming desire for orange juice and sweet pickle relish.

“It was the most random things and they were two things I had abhorred before the transplant,” Holbrook said. “It turns out they were two of the girl’s favorite foods.”

Food preferences and allergies can change after a transplant. Holbrook has plenty of experience with those. After all, the heart beating in her chest today is her fourth.

Today, Holbrook is a 25-year-old senior at Brigham Young University in Provo pursuing a degree in public relations. She’s also become the face of a campus-wide campaign to register more students as organ donors.

BYU’s chapter of the Public Relations Student Society of America is participating in the National Organ Donor Awareness Competition, which challenges public relations students to have a campaign and daylong event to raise awareness for organ donation. Students have been working on the campaign since January and will hold an event Monday at Brigham Square.

Someone is added to the national transplant waiting list every 10 minutes, according to the United Network for Organ Sharing, and 20 people die each day waiting for a transplant.

But the public relations students have found that educating students on organ donation isn’t easy.

“As we have done research on campus, we’ve found that most people are misinformed and misunderstand what organ donation is, even though a lot of students are organ donors themselves,” said Anna Johnson, a junior at BYU who is working on the competition.

They’ve found that even people who have registered to be organ donors don’t understand it and that students believe myths about organ donation. Those include people who don’t think they can have an open casket funeral if they are an organ donor (people can) or that doctors won’t try as hard to save their life if they are an organ donor. They also found students didn’t like talking about death.

“Someone has always lost a loved one in that situation,” Johnson said. “Even though it is filled with hope and healing, there is that tragic part to organ donation.”

Others questioned if The Church of Jesus Christ of Latter-day Saints, which owns and operates BYU, is against organ donation. It’s not.

“The donation of organs and tissues is a selfless act that often results in great benefit to individuals with medical conditions,” Handbook 2: Administering the Church states. “The decision to will or donate one’s own body organs or tissue for medical purposes, or the decision to authorize the transport of organs or tissue from a deceased family member, is made by the individual or the deceased member’s family.”

The public relations students also found that BYU students didn’t connect the 2016 death of Elsie Mahe, the 3-year-old daughter of former BYU running backs coach Reno Mahe, to organ donation.

Elsie died after an accident involving a window blinds cord and her organs were donated. Billboards along Interstate 15 have publicized the donation and a nonprofit foundation, Miracles from Elsie, was formed.

Johnson said she wasn’t aware Elsie Mahe was an organ donor until a segment on her was aired during general conference weekend. Johnson said more BYU students might be aware of the donation after watching the segment.

Four hearts

Lauren Holbrook was 4 months old when she was diagnosed with Kawasaki disease, a disorder that causes aneurysms in the bloodstream. Holbrook’s aneurysms were in her coronary arteries — and it wasn’t fixable.

She received her first heart transplant at Primary Children’s Hospital in Salt Lake City when she was 18 months old. Then, at the age of 12, she learned she was in heart failure due to transplant coronary artery disease, which can be caused by the medication cocktail transplant patients take following a transplant to reduce the risk of rejection.

She received her second heart transplant at the age of 14 in New York. She developed coronary artery disease with the new heart and received a third transplant in Chicago.

The medications led to six cases of post-transplant lymphoproliferative disorder, a rare cancer and non-Hodgkin’s lymphoma, which was treated three times surgically and three times with chemotherapy. Holbrook ended up missing two years of high school and finished her latest round of chemotherapy two weeks before starting college.

But despite all her health struggles, she considers herself lucky to have her reality always have been her normal.

“I grew up with this so I don’t really know anything different, which is a great blessing,” Holbrook said. “I try to imagine someone who is 21 and being told they need a heart transplant. That would just shatter your whole world.”

She’s been doing great ever since and has stepped into the role of advocating for organ donation.

“For me, it is a way to connect with other people and realize how important this is and how rampant this issue is and help others realize there are others at this university who go through hard things and you are not alone in whatever you go through,” Holbrook said.

She’s friends with a 9-year-old who has had two heart transplants and the two have sleepovers.

Holbrook has also become friends with the family of the donor she received her second heart transplant from.

There are restrictions around how donor families and recipients communicate, but the donor family was able to mention in a letter a foundation they were starting. Holbrook looked it up and contacted them.

The donor family visited Holbrook when she lived in New Jersey. The Holbrooks later moved to Chicago, which is where the family was also from.

“They were able to come to the hospital before their daughter’s heart was transplanted out to listen to it one more time,” Holbrook said.

She learned that her second donor had special needs, but there’s not much she knows about the other two. Her first donor was a 3-year-old boy and her current heart was donated from someone who was between 18 and 40 years old.

Her medical journey has changed her perspective on sacrifice, especially because a heart can’t come from a living donor.

“It gives a whole new meaning to this idea of friendship and service and being able to give something to somebody that will literally change their life,” Holbrook said.

She advocates for parents in teaching their child how to drive as not just a time to learn about the road, but to open up the conversation about organ donation. Learning early, Holbrook said, makes it easier on families later.

“It comes down to this whole idea of people need to be more educated about it, because when it does happen to a family, they need to know what’s happening and it is hard to find out right in that moment,” Holbrook said.

Holbrook will graduate later this month, and her transplant history places restrictions on where she relocates. Due to checks she undergoes every three to six months, she’s limited to North American cities where she can receive heart transplant care.

People can register to be an organ donor at the BYU event, Celebrate LYFE, from 11 a.m. to 3 p.m. Monday in Brigham Square. The BYU chapter of the PRSSA is partnering with Intermountain Donor Services for the awareness event, which will include a shaved ice truck, photos and stories of those who have been impacted by organ donation, wristbands and a raffle.

People can register to be an organ donor by selecting “yes” when they apply for a driver’s license or they can register online through Utah’s Organ Donor Registry.

The BYU team will learn in October how they did in the competition.