Teen needs heart transplant, help with cost | Albuquerque Journal News

By Argen Duncan / Rio Rancho Observer Staff Writer

PUBLISHED: Sunday, June 22, 2014 at 12:27 am

A young Rio Rancho woman needs a heart transplant to live a normal life, and a local group is raising money to help.

Melissa Varney, 18, has obstructive hypertrophic cardiomyopathy, a genetic disorder. Her adopted mother, Cathryn Varney, said Melissa’s heart wall is so thick that it keeps the heart from pumping blood properly and makes the cavity of her left ventricle too small, obstructing blood flow.

The only treatment is a heart transplant.

“She gets a new heart, she’ll have energy, she’ll be able to do things,” Cathy said.

Melissa Varney, 18, spends time with her adopted father and biological grandfather Ron Varney. (COURTESY photo)

Now, the lack of oxygenated blood in her lungs causes so much fatigue that Melissa has energy for few activities. Cathy worries about the possibility of sudden death, which sometimes happens in young people with Melissa’s condition.

The anti-rejection drugs required after a transplant might cause problems, but Melissa will still be better off.

A transplant costs between $500,000 and $1 million, Cathy said. Medicaid will pay for the transplant itself, but the Varneys need another $50,000 for things such as prescription medication and staying in Denver for at least a month after the transplant.

That’s where the Children’s Organ Transplant Association comes in. The organization makes sure the families of children needing transplants can pay for the operation and anti-rejection medication those kids need for the rest of their lives.

A local group is raising money for COTA in Melissa’s honor. Cathy said the funds go into an account from which COTA pays transplant-related costs.

People can donate online at COTAforMelissaV.com, and the group is planning fundraisers. Donations are tax-deductible, and 100 percent of contributions goes to transplant expenses.

A meeting of the local COTA group is set for 6 p.m. Monday at ReadWest, 2009 Grande Blvd. It’s open to anyone who wants to help.

Melissa’s life was never easy.

Cathy said Melissa was born with White Parkinson Wolf syndrome, which means she had too many electrical pathways in her heart. Most people have one electrical pathway in their hearts; Melissa had four.

According to information from the local COTA committee, her parents separated when she was about 3 years old, and her mother took her to Las Vegas, Nev.

“As her mother’s life went downhill, she dragged Melissa down with her,” the information said.

Melissa was in foster care until one of her mother’s ex-husbands helped find Cathy and her husband, Ron, who is Melissa’s paternal grandfather.

Cathy and Ron adopted Melissa when she was 9. Her mother died on Melissa’s first day of fourth grade.

Two of the electrical pathways in Melissa’s heart were medically stopped, and she has a pacemaker/defibrillator. However, Cathy said, as a preadolescent, the girl’s heart wall started thickening.

Doctors ordered Melissa to stop running at age 10. She was an ice skater, but now can only glide around the rink a little.

She does participate in Rainbow Girls, the girls’ wing of the Shriners organization.

Melissa didn’t finish high school because she couldn’t walk around the Rio Rancho High School campus. Cathy said Melissa plans to get her GED, but her condition keeps her from getting a job.

“On a good day, she can do things,” Cathy said. “But like an old lady, she’s good for an hour or two and then she has to rest.”

Melissa’s name went on the transplant list May 21. Since then, the family has been ready to leave on a moment’s notice. There’s no way to know when a heart will become available.

Because no hospital in New Mexico does heart transplants, Cathy and Melissa will rush to Denver by air ambulance.

“I never go anywhere without my phone,” Cathy said. “Even if I’m in a place where cell phones aren’t allowed, mine is going to be on.”

Meanwhile, Cathy said Melissa is a normal teenager. She likes taking photos of herself with her cell phone, hanging out at the mall and dancing.

“She’s very shy unless she’s with other kids,” Cathy said.

Cathy worries about whether Melissa will survive to get a new heart.

“She also gets a little spoiled, because I figure, if your life’s going to end before you’re 20, live,” Cathy said.

via Teen needs heart transplant, help with cost | Albuquerque Journal News.

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