The medicines and doctor’s appointments are challenging but the life in between can be fulfilling.
“The trade-off is this really great quality of life in between these medical events,” Dearani said.
For the parents, the worry extends beyond the girls’ health. Medical costs easily exceed $1 million a year for each. Noel Rippy works full-time in remodeling and construction, but the family relies on the state’s MinnesotaCare health care plan to cover the girls’ medical care. The family pays a $200 monthly premium for the insurance, which is tied to families’ income.
The Rippys still have plenty of out-of-pocket expenses, including the frequent trips to Mayo.
Linsey Rippy doesn’t work outside the home. Dealing with appointments and insurance and caring for the girls fills her days.
The medical costs influence nearly every daily decision the family makes — where they live, what they buy, what they do.
She’s become more politically active. She’s a supporter of President Obama and is passionate about Obamacare, which eliminated lifetime maximums on health care costs and allows people with pre-existing conditions to buy insurance. She wrote a thank-you letter to Obama, and he wrote back.
“I said, ‘Thank you for caring for kids like mine,’ ” Linsey Rippy said. “I adore the man.”
Linsey Rippy is upbeat and matter-of-fact when she talks about the girls’ medical history, rattling off medical jargon and then explaining it in lay terms.
She acknowledges that she takes an antidepressant to dull the anxiety that sometimes plagues her.
Her life is forever changed. She can’t imagine going back to work. Her needs and their marriage will always take a back seat to the girls’ care.
Mayo staff often have her talk to other transplant families. She also networks with transplant survivors for support and advice.
“I talk to a lot of adult survivors. The biggest advice they have is, ‘Your daughters have been through hell but they shouldn’t act entitled because of it.’ I try to give them as normal a life as possible.”
The Rippy family raises money and hosts toy drives and blood drives. They make fleece blankets and goody bags for other young heart patients. And she tries to teach her daughters to be strong.
“I tell Madison, ‘There’s no crying in baseball.’ I want her to own that strength with what she has gone through.”
The family is hoping to take a trip to Disney World this year through the Make-A-Wish Foundation. Their application is pending.
“It strikes you we are doing this. We are surviving,” Linsey Rippy said. “We are not just living life, we are enjoying it.”