Public Service Recognition Week: Lauren Aggen, DFAS Indianapolis

INDIANAPOLIS, IN, UNITED STATES

05.04.2022

Story by Kalyn Curtis 

Defense Finance and Accounting Service

INDIANAPOLIS, May 4, 2022 - Lauren Aggen was born on a frigid day in Chicago, Ill., in December 1989, the doctors only gave her three days to live, but Lauren surpassed doctors' expectations and lived.

Aggen was born with Hypoplastic Left Heart Syndrome, a congenital heart defect that does not allow the left side of the heart to pump blood to the body effectively.

According to the Mayo Clinic – a typical heart has four chambers, two on the right and two on the left. This is because a heart pumps blood throughout the body, using its left and right sides for different tasks:

"The right side moves blood to the lungs. In the lungs, oxygen enriches the blood, which then circulates to the heart's left side. The left side of the heart pumps blood into a large vessel called the aorta, which circulates the oxygen-rich blood to the rest of the body."

In Hypoplastic Left Heart Syndrome, the lower-left chamber is either too small or, in some cases, does not exist at all. The valves on the left side of the heart also do not work correctly, and the main artery leaving the heart is smaller than average.

The Centers for Disease Control and Prevention estimates that about one in every 3,841 babies born in the United States each year is born with Hypoplastic Left Heart Syndrome.

THE PHONE CALL

"They said I only had a few days to live, and in a few days, it would have been Christmas," said Aggen, a heart transplant recipient.

"I stuck it out for eight days and the doctor said, 'You know what, Lauren is very sick, and we need to remove her off the transplant waiting list,' and right then and there the phone rang," explained Aggen.

The phone call came from Austin, Texas. The heart donation came from a baby that passed away from sudden infant death syndrome, also known as SIDS.

"I will share with you that there were eight babies [who needed a transplant] at Chicago's Hospital, Children's Memorial Hospital, the year that I was born," said Aggen. "I have been very fortunate to be where I am today and I have of the eight babies, Alex, my dear friend has had her heart as long as I have, we are the same age," Aggen said.

Lauren is one of the longest-living infant heart transplant recipients that still has the heart she was given at just eight days old. Who is the oldest, you may ask? At 35 years old, Eddie Anguiano, known as "Baby Moses," is older than Aggen by a couple of years.

AUSTIN'S GIFT

"I don't know who my donor family is. I wrote them a letter and they never responded to me, and that's ok," said Aggen.

Lauren got very ill as a teenager and had to spend a lot of time in the hospital, which allowed her to fantasize about what her heart donor looked like. What their name was. Where they were from. She dreamed about meeting her donor's family one day and thanking them for what they had given to her.

Although the donor family had not reciprocated Lauren's attempt at contacting them, when the Make-A-Wish Foundation visited Lauren's bedside, she saw an opportunity to reach out in a bigger way.

"When the Make-A-Wish Foundation came, I said 'I want my writing published; I don't want you to write it, I want to write it,'" Aggen explained. "So, I published a teenage diary, which is how I view it."

Her book titled Austin's Gift: The Life of a Grateful Organ Recipient is a compilation of stories involving her parents, family, and friends. Aggen writes about life as an organ donor recipient and someone living with permanent hearing loss and how that has affected her life.

IT TAKES A VILLAGE

They say it takes a village to raise a child; in Lauren's case, that village included several doctors and nurses alongside her parents and her older brother.

While waiting for a heart, the medication she was on damaged her hearing, making her hard of hearing. Her mother had spent years as a speech pathologist, and her father was a high school teacher.

Aggen states that she is extremely grateful for her family's dedication to helping her throughout her life. Lauren says that her parents did everything to learn their new roles as caretakers.

"My parents did everything they could to really learn," Aggen said. "As new parents, you think, 'Ok, she got the new heart, she's going to be fine,' and then it's like – here are some things you need to know about… it's a new world," Aggen said. "My parents really took whatever information they could, and they got a lot of support from the community."

Those of us who grew up with siblings know that it's not always easy trying to get along with them, but for Lauren, her brother, David, treated her with kindness and understanding.

"We all have sibling rivalry, but I have had the kindest brother," Aggen said. "Being isolated with what I can and can't do, I had an older brother that always engaged me in his activities. He introduced me to his friends, he [and my parents] really made me feel like I was just like everyone else."

One could say that Lauren has quite the village. In fact, because of Aggen's diagnosis – her older brother David grew up to become an Oncologist.

Aggen also states that she feels supported through her extended family. Lauren said she is not the only one in her family that has received an organ transplant. Her uncle, by marriage, received a kidney and pancreas transplant, and her late grandmother received a cornea transplant.



FACING HEALTH COMPLICATIONS

Because of the transplant, Lauren takes anti-rejection medication regularly, and this medication damages her kidneys. Although Lauren may need a kidney transplant in the future, doctors say that right now, she is healthy.

Lauren has had to be careful with certain activities and pay close attention to her diet.

"The reality is when I was born, doctors said I would only make it to kindergarten, and then I made it through kindergarten, then they said maybe fifth grade – and I made it through fifth grade," Aggen said.

"At the time they didn't have that much information on organ donation and recipients; so, I was a little bit of a science experiment in some respects. So, the question will always be on the table in the future, 'Will I need another heart?' If my heart rejects, there is always a possibility that I may need another heart, but right now my heart is strong," said Aggen.

Although Aggen says she doesn't think of her heart transplant and the complications that may come with it very often, she says that it is an important reason she tries to take care of herself.

Aggen admits that she is "not an athlete," but she does try to stay in shape by going on regular walks on her lunch break, eating healthy, and staying away from certain activities.

"I have to watch certain things that I eat. I can't have blue cheese; I can't have raw fish; I can't do certain life activities, which I don't often think of. I just know that I can't do them, like scuba dive. If there's a hot tub, I shouldn't be in the hot tub that long or it could reject my heart," Aggen said. "But that doesn't bother me, because I prefer to go in a swimming pool anyway!" said Aggen.

COVID has been especially challenging in terms of being immunocompromised. However, Aggen says that she does have to be very careful with where she goes and who is around her because it would take her longer to recover from even common illnesses.

Like many, Lauren and her husband recently got married. While Lauren did say she wished she could have invited everyone she and her husband love and value, it wasn't in the best interest of Lauren's health.

"I made a decision, along with my husband, that we would just get married, and it would be the two of us and the pastor," Aggen said. "It wasn't a big wedding party because we couldn't risk someone saying they're fine and could have been asymptomatic. If I were to get it, it would be worse because even though I may have gotten vaccinated, I have a very weak immune system. I have been told by my doctors that I have to be very careful of who I am around, so I will say that my social life has decreased because of my comfort level of what I can and can't do," Aggen said.



HOW TO SAVE A LIFE

Lauren often speaks to those contemplating organ donation and breaks the ice by saying: "You know you can save a life with a pen?" The common response – "Yeah, an Epi Pen." Lauren laughs and says, "Yes, that's true, but I'm also talking about registering to be an organ donor." She went on to say:

"It's not every day that you think about, 'What do I do with my body after I pass away?' That can be a very sensitive topic, but if you want to help other people, consider signing up to be an organ donor, because you can save up to eight lives through organ donation and provide healing for 75 people through tissue and cornea donations."

If you would like more information on organ donation, please visit www.organdonor.gov.

• Date Taken: 05.04.2022
• Date Posted: 05.06.2022 10:13
• Story ID: 420120
• Location: INDIANAPOLIS, IN, US