Lanayah Rivera has a new heart for her birthday, which is also Valentine's Day.
Rivera just underwent transplant surgery in Kansas City, receiving a new heart at Children's Mercy Hospital. She and her family hope that life can resume in a bit more normal fashion for the eighth-grade Chisholm Middle School student.
"She was a normal, healthy kid. She was avid in soccer most of her life. She has played basketball with the rec center. She loves swimming and all kinds of things," said her mother, Pam Rivera. "She never had an issue. She had a little bit of asthma."
But things changed about two months ago, at the start of the basketball season. She was playing for the Chisholm Middle School team when she would run out of pep and not be able to breathe. The family had gone shopping for shoes, and at home, Lanayah felt like she was having an asthma attack.
But this one was not normal.
"She took her inhaler, and it did not do anything. She took it a couple of hours later at it still did not do anything," Pam said. "I took her blood pressure and her heart rate was 141, which is crazy high."
They went to the Emergency Room, where testing showed almost everything was OK — but doctors found fluid in her lungs. No one at that time really knew what was happening. Lanayah was sent home with medications.
She could not get over what was bugging her, and a trip to another doctor was made. Chest X-rays showed her heart was enlarged.
"As a mom, I was freaking out," Pam said. "I was going in with the idea that she just needed another inhaler to help her."
The next day, the pair saw a cardiologist in Wichita who ran more tests. They were referred to Wesley Children's Hospital for transport to Children's Mercy Hospital in Kansas City.
"He showed me with his hands how a heart should be pumping, and that her heart was basically spasming, not really pumping," Pam said. "She was airlifted from Wichita to Children's Mercy."
There, she was diagnosed with dilated cardiomyopathy — a condition in which the heart's ability to pump blood is decreased because the heart's main pumping chamber, the left ventricle, is enlarged and weakened.
"It is the left ventricle of her heart that was really swollen and enlarged," Pam said. "For that diagnosis, there is not a cure."
Medications were prescribed to try and manage the condition. Two weeks went by and she was hospitalized — in Kansas City — three times in the month of December.
"Because your heart is working so hard to get to all of your major organs, it was not getting the blood flow to needed to her intestines and stomach," Pam said.
After five hospital stays, Lanayah was evaluated for a heart transplant and placed on the wait list for a transplant. On Jan. 20, the call came — a heart was available. Following an eight-hour surgery on Jan. 21, Lanayah had a new heart.
"I was very excited," Pam said. "She just wanted to get back to her normal life and being a kid. She was getting so many things taken away from her. She couldn't do sports. ... I was also very sad for the family who has lost someone. It was overwhelming."
For the next few months Lanayah, at least, will have to live close to Kansas City, close to the hospital, for monitoring and recovery. She is, however, looking forward to coming "home, home."
A fund has been established for Lanayah to help with the expenses of the transplant and future transplant needs, at https://cota.org/campaigns/COTAforLanayahsJourney.