Adam Mandarakas dreams of at least one last visit to Andros, the beautiful Greek island south of Athens where he was born and still owns a small farm. “My heart is there,” said Adam, 73, of Millington, N.J. In fact, his heart is what has prevented him from visiting his homeland in recent years, due to a progressively worsening genetic condition that led to heart failure. But a medication he receives at home via infusion 24 hours a day is helping him breathe easier, enjoy life more and, hopefully will help ensure he and his family can make the trek to Greece.
“His quality of life has improved dramatically since he’s been on the home infusion,” said Georgette, Adam’s wife of 46 years. “He can walk three times as far as he could before and we’re able to go out for lunch a few times a week with friends from the restaurant business.”
At 38, Adam, frequently dizzy and feeling poorly, was diagnosed with idiopathic hypertrophic subaortic stenosis (IHSS), which causes enlargement of the left ventricle of the heart, significantly decreasing its function. Doctors at the National Institutes of Health (NIH) studied him extensively and prescribed various medications and treatments, but ultimately said he needed to stop working. They sold the family seafood restaurant and moved from New Jersey to Athens to be with Adam’s family. After nine years, they moved back to the United States so their sons could attend college here.
Adam’s heart condition continued to worsen. In 2015 he was diagnosed with congestive heart failure and began taking water pills (diuretics) to reduce the fluid accumulating in his body because his heart can’t pump effectively. The pills stopped working and Adam was in and out of the hospital for three months in early 2016, spending a week or two in the intensive care unit each time having the excess fluid drained from his body. Doctors put him on inotropic infusion to help his heart pump more effectively and he felt much better, but when they took him off, he declined. They recommended he receive the medication by infusion 24 hours a day through a port in his chest so he could remain at home and enjoy his life as fully as possible. The medication is kept in a fanny pack that makes travel easy. Since he began home infusion in April, 2016, he’s only visited the hospital once, to have the port changed.
Adam’s home infusion is covered by Medicare, but a new law called the 21st Century Cures Act is creating a gap in Medicare coverage of inotropic home infusion. Some Medicare patients won’t be able to get the care that has helped improved Adam’s life. For many, getting the medication in the hospital or living in a nursing home will be the only option. Adam can’t imagine that. “I’m not going to a nursing home, I’m a live person!”Take action to amend the Cures Act
Thanks to the home infusion, Adam can enjoy sitting on his porch on warm days, and envisioning getting back to the gardening he loves. It allows Georgette to substitute teach now and again for a change of pace and to help with the finances.
An infusion nurse comes to the house once a week to take Adam’s vitals, check his blood and be sure the infusion equipment is working smoothly. The care high quality care is important, says Georgette, as is the support of family.
“Our son lives nearby and our granddaughters visit two or three times a week, which brightens up his mood,” said Georgette. “They’ll watch a Disney movie with him and tell him about their schooling and we all have dinner together.” His sisters also live nearby.
Family is important, says Georgette, and she and Adam are thankful they are close and he can enjoy them. They vacationed in Cape Cod last summer with their son and his family, which made them realize an overseas trip was possible. As for planning for their 47th anniversary in June, Adam doesn’t miss a beat. “We hope to celebrate in Greece.”
“His quality of life has improved dramatically since he’s been on the home infusion.”