At just 24 years old, the Roman twins have each had heart surgeries that cost more than $1 million.
If they’re lucky, they’ll both have another million-dollar surgery in their futures. They’ll need even more good fortune to be able to afford to stay alive.
Edwin and Edward Roman have a condition known as cardiomyopathy, which causes the muscles in their hearts to enlarge, thicken and harden, reducing their ability to pump blood throughout their bodies. Symptoms include swelling in the legs, bloating in the abdomen, fatigue and difficulty breathing.
This disease will kill them unless each brother gets a heart transplant. Even under the best circumstances, they can expect lower-than-average lifespans, a grim fact the brothers from Summit, New Jersey, know all too well. Their mother died two years ago at age 46, 20 years after receiving a heart transplant for the same condition. She carried the debts from that transplant the remainder of her life.
The Roman brothers both work at the local pizza joint Village Trattoria. Edwin started experiencing symptoms six years ago and his condition deteriorated last year.
“As the time progressed, it got worse and worse, where the medicine couldn’t really help the heart function,” he said. “Medicine can only work so long for a failing heart.”
But it was Edward who needed urgent surgery in late 2018, when he suddenly started feeling ill and was hospitalized. In December, Edward had a device implanted that sends electrical signals that cause his left ventricle to pump his blood, effectively controlling his heartbeat. He spent 45 days in the hospital.
Edwin underwent the same procedure in February and had a month-long hospital stay.
Edward’s surgery bills came to $1.3 million, and Edwin’s $1.1 million. While the brothers both have health coverage, they still aren’t sure how much of the cost of their surgeries they’ll have to pay out of pocket. Edwin, who has private insurance, says he expects to owe the hospital about $400,000. Edward qualified for Medicaid, which seems to have covered most of his costs. But as the bills start to trickle in, both worry they’ll end up owing much more than they have on hand.
What they truly need are heart transplants, which would entail another million-dollar-plus surgery for each brother and unknown ongoing costs. Already, Edwin takes 11 prescriptions drugs and Edward takes seven.
When HuffPost visited them at work in April, customers trickling in for the early dinner rush offered the brothers support and good wishes. They seemed to know everyone in Summit; Edwin has worked at the shop for seven years, and Edward for six.
“People love us here,” Edwin said. “We are the face of this restaurant.”
It was their Village Trattoria co-worker Quinn Butler who had the idea of starting a GoFundMe campaign to help the Romans raise at least some of the money they need for medical expenses. Butler, 18, graduated from high school this month and plans to study nursing at New York University in the fall.
“What 24-year-old has $400,000 lying around?” Quinn asked.
Quinn started the project while Edwin was still recovering in the hospital and used social media to spread the word around Summit. There’s a printout of the GoFundMe page taped to the counter by the cash register, too. Most of the donations have come from customers and other local residents.
“Anybody who knew us around here helped us,” Edward said.
Butler and the Romans set a $100,000 fundraising goal in February, later increasing it to $200,000 but knowing full well that neither amount would be enough. The trio worried that asking for what the brothers actually needed would discourage people from contributing under the belief that their money wouldn’t be enough to fill such a large hole.
The campaign has raised almost $140,000 so far. The contributions grew very rapidly at first ― $22,000 the first day, $100,000 the first week ― but soon petered out.
With the help of professionals volunteering their time and expertise, Butler set up a trust to keep the money safe from creditors and taxes. Edwin and Edward are the beneficiaries of the trust and must apply for financial aid from the trustees. They’re also getting help from a local charity, The Other Fellow First Foundation, that’s run from the historic Summit Diner and provides small cash assistance to needy families in the area. The trustees and other local leaders also are trying to negotiate with the hospital to reduce the twins’ bills.
The brothers are lucky in some ways. Village Trattoria held their jobs for them and even helped with their bills a little, which is not often the case for people working hourly wage jobs.
“Our boss is a great guy,” Edwin said. “He was the one who saw firsthand my health going downhill.”
The brothers missed two months of work during their surgeries but tried to work as many hours as possible even as they recovered after their hospital stays. Edward returned to work part-time soon after his surgery so they’d have some income during his brother’s treatment. “We needed to do whatever we could do to make money,” Edwin said.
They still aren’t well enough to go back to work full-time.
Their greatest financial needs now are for basic expenses like rent, which the GoFundMe campaign has helped cover. They also have to move because the owner of the condo they currently rent is selling. They found a new place in nearby Union for them and their Boston terrier, Desta.
They brothers are trying to get back to something like their normal lives, although the physical limitations of their condition don’t quite make that possible. At work, they mainly perform tasks like taking orders and working the cash register. In their personal lives, they can’t bicycle as much as they used to, and Edwin had to give up playing hockey.
They’re participating in cardiac rehabilitation therapy to strengthen their hearts, and the devices keeping them alive require constant checkups.
Cords connect their hearts to large bags containing left-ventricular assist devices, or LVADs, through incisions in their chests. These devices control 80% of the brothers’ heart function, so a malfunction could be fatal. The incision sites have to be clean. The batteries must be kept charged, and the devices have to be plugged into wall sockets while they sleep. Both brothers keep a bag containing backup devices and spare batteries with them at all times.
“It’s a routine now,” Edwin said. “We need to live life. This is what we got to live with at this moment.”
Their doctors say these machines could buy them 10 to 15 years of life while they’re on the waiting list for heart transplants. The twins don’t know how long that wait could be, or even if they’ll ever get new hearts.
But the Roman twins remain focused on the positive. The staggering amount of money they need to stay alive won’t stop them from living life in the meantime.
“What is there to be mad or get frustrated about?” Edward said. “We’re still happy. There’s no down part about us.”
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This article originally appeared on HuffPost.