After high school, Benjamin Armstead worked in the steel mill in Canton, Ohio. His wife, Lovie, remembers when he started to come home coughing. His primary care doctor told them Benjamin had sarcoidosis – a condition that can affect anyone, but is more common in African Americans – and prescribed prednisone and anti-inflammatory medication to manage the condition.
“He was treated for about 15 years,” Lovie says, “And the medication is what took his kidneys out. He’s never had hypertension or diabetes – it was the medication that started our journey.”
For Lovie and Benjamin, his diagnosis of kidney failure six years ago and the sudden changes to Benjamin’s health were traumatic.
“He couldn’t hardly accept it – it was just surreal – so he even had a second opinion.”
Doctors at the Cleveland Clinic confirmed that Benjamin’s kidneys were failing and that, until he could be transplanted, he would have to go on dialysis. He began receiving dialysis back home at Canton Mercy Hospital, but Benjamin and Lovie’s children wanted them to be closer so they could help with his care.
While the move to just outside of Columbus, Ohio, provided them with the support of their family, the move from North Canton was emotional. They sold the home they’d shared for over thirty years, where they had built a life together, raised a family, and become part of the community. They were saying goodbye to their home and setting off on a journey full of uncertainty and obstacles.
One thing Lovie shares about her husband’s experiences as a patient, and her own as his caregiver, is that they have both had to fight every step of the way. Fight to remain healthy enough to get to transplant, fight to receive the level of care that each person is entitled to, and fight to keep pushing ahead even when the emotional and physical tolls of the journey became nearly unbearable.
And they had to keep fighting for six long years.
“We were waiting, waiting, waiting,” Lovie says. “Some people give up because they don’t want to live with dialysis, but my husband is a fighter because he loves his family, he loves me, he loves his children, and he loves his grandchildren.”
There were several false starts when Lovie and Benjamin thought his transplant was imminent, but they would suddenly return to waiting. They would begin preparations to have their children travel to Cleveland from all over the eastern United States to be together for their dad’s transplant, only to have to place those plans on hold. Lovie and Benjamin got their hopes up each time, and the disappointment was just that much harder.
“It cut the hopes from under us,” Lovie says. But no matter how physically and emotionally tiring the wait became, neither of the Armsteads gave up.
“You have to have faith in this journey because if you don’t, you won’t make it – you will get weary.”
On June 3rd, Benjamin and Lovie got the call they had waited six years for, and following an overnight surgery at University Hospitals, he received his new kidney. Lovie is grateful that the wait is over, but her husband’s transplant journey continues as he begins a new life of health management. She and Benjamin have been navigating a whole new regimen of medications, diet, and care post-transplant since June.
“We’re just continuing to fight,” she says. “It’s a lot. It’s very emotional. It can be depressing at times. You worry about your finances. And after the transplant with all the medications, I don’t even know how much the total cost is, but I’ll tell you I thank God for Transplant House. We couldn’t have made it without Transplant House – the compassion, the love – it’s really emotional for me because we wouldn’t have had a place to live.”
“Today is my first visit to Transplant House,” Lovie’s daughter, Kellie Didigu, explains, “and I’m very impressed with the accommodations and how they have everything. I’m not certain that places like Transplant House are throughout the rest of the country, but it’s a great model that helps so many people.”
For Lovie and Kellie, the need goes beyond housing– education and community awareness are also vital to transplantation.
“There needs to be more outreach and understanding of the whole transplant process,” Kellie says. “Particularly in the African American community because it seems like the numbers are very high there.”
According to Donate Life America, of the approximately 100,000 individuals awaiting transplants, 60% are from multicultural communities. And while race is not a factor when matching donors and recipients for transplants, increasing donor registrations across diverse communities helps all who wait for a second chance at life through a transplant. This need prompted the creation of National Minority Donor Awareness Month in 1996. Every August, organizations related to transplants seek to raise awareness of organ transplantation, provide education about the donation and transplant processes, and encourage donor registration in multicultural communities.
Lovie, as for so many transplant families, has had to learn about the process while in the midst of it. Nevertheless, she radiates gratitude when talking about their journey – thankful for the care from the surgeons and transplant teams at University Hospitals and in awe of the miraculous gift of a second chance at life for Ben.
“I would like to say to anybody, you have to make sure you have family support, have faith, and make sure you keep up with your doctor’s appointments,” she says, “and you have to learn for yourself, you have to do research on our own, and you have to have a community that can advocate for you and gives you the language to advocate for yourself.”
As to why Lovie and Benjamin want to share their story with others?
“I just want to tell people that ‘You can make it,’ you know. You can make it. And Ben just wants people to know that transplant is a second chance at life.”