Transplant patient makes it home for 13th birthday

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SEYMOUR, Ind. (AP) — Emily Hume has a lot to celebrate.

The Seymour Middle School seventh-grader fought an unknown virus that attacked her heart last year, underwent a heart transplant in March after a failed attempt almost a month before and is now getting back into her old routines at home after leaving the Ronald McDonald House in Indianapolis a few weeks ago.

All of this just in time to celebrate her 13th birthday Wednesday.

"All along we kept saying, 'The best birthday present ever would be to be home on your birthday,'" Emily's mom, Linda Hume, told The Tribune (http://bit.ly/1hCMJ6H ). "We made it, didn't we?"

Emily smiled, sitting in a recliner at the Humes' home, wearing sparkly, pink slippers that she received as a gift from a nurse. Her cheeks slightly full from steroid medications, she wore a bright, pink T-shirt that read "Heart of an Owl" on the front. Friends and family sported the shirt in Emily's honor when she was away at the hospital.

"It's been good," Emily said. "I feel like now that I'm home I've gotten a lot stronger."

Since July, Emily has spent almost every minute at Riley Hospital for Children at Indiana University Health in Indianapolis battling a form of cardiomyopathy, which weakens the heart.

She eventually was listed as a status 1A on the United Network for Organ Sharing — the highest status a patient can receive on a heart transplant list. She had one failed transplant attempt when a donor heart was deemed too weak for her; but on March 21, she had a successful transplant surgery.

The donor's information is kept confidential, but Emily said she will have a chance to write the family a letter.

She came home April 25, greeted by an assortment of balloons and "welcome home" signs from the community, which still decorate the Humes' household. On Wednesday, Emily received good news from the doctors about her recent biopsy.

"They said it came back negative and no signs of rejection," Linda Hume said. "It's like 'Hallelujah!'"

Before receiving the donor heart, Emily was attached to a Berlin Heart through her abdomen to strengthen her weakened heart. She nicknamed the device "Bernie" and recalls it being one of the most uncomfortable times at the hospital.

"It hurt sometimes," Emily said. "I couldn't move my legs in some positions because it would dig."

"With the Berlin you always had to lay on your back," her mom added.

Linda Hume said maintaining family life was one of the hardest parts. She took time off of her job at Redding Elementary School as a third-grade teacher and her husband, Jim Hume, who works at Aisin U.S.A, made numerous trips to Indianapolis and took care of their other daughter, Lindsey, who is a student at Seymour High School.

"There would be days I just think back, and I didn't even walk out of the hospital," Linda Hume said. "You think back to that small room we were in."

Conversations through FaceTime via cellphones were a nightly routine among the four, but it's nothing like being in the same household, Emily said. She added she likes being there when her sister gets home from school or dad walks in from work.

"Just being together," Emily said.

"Family life is getting back to normal, thank goodness," Linda Hume said.

Even though she's endured many hardships, Emily said she created some fun memories along the way.

She met some Indianapolis Colts players, including quarterback Andrew Luck; was introduced to some of the Indianapolis Indians; and met two professional racecar drivers.

She also made friends with the doctors and nurses at Riley, celebrating holidays together and receiving encouraging words from them.

"The nurses were fun," Emily said. "They were like sisters to me."

Linda Hume said Emily's accomplishments at the hospital are positive memories.

She recalled Emily learning to walk with the new heart and without the Berlin. Emily started out holding the hands of two people, maneuvering along and eventually just held on to one person, her mom said.

"You don't have to hold anybody's hand anymore, do you?" she said, looking at Emily from the couch. "You've come a long way girlfriend."

Being at home has given Emily a new set of goals to overcome with her new heart.

She continues to take daily medications, has dressings changed on her chest and travels to Riley frequently for doctor appointments and physical therapy. She must avoid certain fresh fruits and vegetables but strives to eat as healthy as she can, choosing frozen yogurt over ice cream.

Linda Hume said she hopes to have some of Emily's appointments in Seymour. She also said the slightly swollen face and thin hair will get better as Emily is weened off her medications.

Emily's mom said there are some medications, however, that her daughter may have to take the rest of her life.

Emily can't be surrounded by big crowds yet, like restaurants and shopping malls, her mother said. Guests in the home must wear masks to prevent germs from spreading. She also has to avoid heavy sunlight because the medications she's on will make her burn easily.

It can be frustrating on some days.

"I always ask Dad, like 'Why am I not physically ready yet?'" Emily said. "I thought I was going to be like perfect right after my heart transplant."

But she continues to push forward.

Emily has found that being at home she's been able to try different exercises, climbing stairs to her room, passing a beach ball back and forth to family members and getting outside a bit to watch her sister play sports.

"Everyday stuff right now is exercise," Emily said. "It's like getting used to being able to reach things and being able to stand if I want to brush my teeth."

Besides monitoring her health, Emily is working to finish her seventh-grade school year. She will finish through Riley's school program, which she has been involved with since arriving at the hospital.

She's maintained high grades and received praise by her teachers in Seymour for her relentless efforts to succeed. She plans to move on to eighth grade at the middle school next year.

"She's keeping up," Linda Hume said.

Emily didn't have the opportunity to spend her birthday at school with her friends Thursday, but she was excited about the cake she and her family were going to make that night.

"Mom and I will make the cake and that will be some exercise," Emily said, smiling and showing her braces. "And Dad will make the icing."

Linda Hume said she's just happy to have her daughter home.

She said the support from not only their friends and family but from people she's never met has been incredible.

"All the prayers and the support and words of encouragement and the cards ... I can't thank everybody enough. It's been overwhelming," she said.

She said she still can't believe the journey Emily has been through.

"Miracles happen," Linda Hume said. "I never, ever dreamed that this would happen to anyone. I think back and think she was so healthy. It's amazing that a virus can do this."

The situation has made the family overlook the minor stresses of life.

"The little things — if your laundry doesn't get done, then so be it," she said. "You just can't stress about things."

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Information from: The (Seymour) Tribune, http://www.tribtown.com

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