Makayla Stokes-Balkcom had a heart transplant on Dec. 31 at just 18 years old.
Now, her family is swamped with medical bills and trying to raise at least $10,000 for her medical care.
“I have racked up quite the bill simply over the past several months,” she said.
The York High School graduate is one of four children, with a sister and two brothers, one who just turned a year old. Her father is a retired Army reservist and a manager at the Newport News Shipbuilding while her mother is the Games Manager at Busch Gardens.
“Two years ago I was diagnosed with a rare genetic heart disease, ARVD,” Makayla said. “Essentially the right side of the heart was deformed and causing irregular heartbeats.”
She described it was “elongated and wonky.”
ARVD, better known as Arrhythmogenic Right Ventricular Dysplasia, is an incurable disease and is the leading cause of sudden death among young athletes, according to the Heart & Vascular Institute at John Hopkins Medicine.
On Sept. 22, 2017, her cheer team coach thought she was having a panic attack and sent Makayla home.
Her heart rate reached 262 and she was sent to Riverside, shocked with an AED before being taken to the pediatric intensive care unit at Virginia Commonwealth University.
A normal heart rate is around 70 to 100 beats per minute.
“That was my first ever episode,” Makayla said. “Throughout two years, I’ve had biopsies, EKGs , echocardiograms as well.”
She was placed on the adult advance heart failure team and started taking Amiodarone, a heartbeat medicine which can cause long-term effects on the body including organ damage.
Makayla had to stop cardio activity altogether.
She said there were three instances where her defibrillator went off: once in May 2018 where her defibrillator was picking up noise and accidentally went off, and two in October 2019.
“Once the heart rate is seen at irregular, fast beat, over 200 heartbeats, the device shocks the body like a regular defibrillator,” Makayla said.
After the third episode in November, Makayla and her family agreed it was time for a heart transplant.
The medicines were no longer working efficiently and were generally used for short-term treatment, she said.
“The word had been thrown out before…but we weren’t where we were yet,” she said. “I didn’t realized it would happen so quickly.”
On the week of Dec. 7, she was put on the list for a heart transplant. Her cardiologist recommended VCU for the procedure, but the hospital’s plan wasn’t covered under her family’s insurance.
Makayla was in the hospital for a week, then spent two weeks at home with her family for the holidays. On Dec. 26 she went back to the hospital.
Then she went into a “V-Tach storm,” after she went from the bed to the chair and her heartbeats became irregular.
Doctors bumped her up from a Level 3 to a Level 2 on the heart transplant list.
She was put on bed rest, hooked up to an amniotic drip and couldn’t really do anything except lie in her bed.
At 11 p.m. on Dec. 30, her family got the phone call. They found a donor and by 6 a.m. the next day, she had the transplant.
Makayla has spent the past month recovery from her procedure, having blood work done to keep the Tacrolimus or anti-rejection medicine levels stable. She also had biopsies every week.
It has not been easy and the week of Jan. 12, she fell ill as her stomach couldn’t handle the medication.
Now, she is starting cardiac rehabilitation to build up her strength.
During heart transplant, doctors needed to break the sternum to reach the heart so Makayla can’t use her chest muscles which is involved in day-to-day activities, everything from brushing her hair and getting dressed, to taking a shower and even lifting a gallon of milk.
Her mother, Jennifer Lawrence helps her do everything, especially since she can’t really do “any kind of reaching”.
Her grandmother also comes over to help.
“It’s a very tiring process,” Makayla said. “You don’t really think about that.”
She said thought it was odd she couldn’t do the routine activities without help.
“It’s weird how a heart transplant can affect so many day to day operations,” she said. “Stairs are surprising tiring at the moment.”
She has had to watch what she eats avoiding pomegranate and grapefruit because of her heart medicine and sticking to a low-sodium diet.
And because her immune system is compromised, she can become sick quicker.
She can have a little red meat but it’s “got to be like a hockey puck”.
“I have the diet of pregnant lady,” she joked.
She is showing progress — she can now make a sandwich.
Future plans include finishing her incomplete courses at Longwood University, where she studies pre-law, criminology and psychology, with the goal of returning to school in the fall semester.
She also wants to become more involved with the heart association with her mother. Even though Makayla can no longer donate blood, she realizes how important it was because she needed blood and she is grateful for it.
“My goal is to become more active,” she said, adding she has to avoid physical activities for at least six months. “Technically I don’t have the heart condition because I don’t have that heart anymore.”
After she got out of surgery, she got to celebrate by painting a ceiling tile, something she said every heart transplant recipient at VCU gets to do.
“I was actually the quickest discharge,” she said. “Nine days.”
To donate to Makayla’s Heart Transplant, visit her GoFundMe page here.