A New Normal for Chinedu

Two years removed from successful sickle cell transplant, Chinedu is still getting used to life after the illness

From a medical perspective, it has been two years since Chinedu overcame his lifelong struggle with sickle cell anemia. But in many ways, that struggle still defines his life. Now settled in Boston and simultaneously working and pursuing a degree, the 26-year-old native of Nigeria has had to come to grips with the normality of his new life.

Diagnosed as an infant in 1998 and in pain since the age of six, Chinedu cold-called a patient recruiter at the National Heart, Lung, and Blood Institute (NHLBI) in 2019. He was accepted into a trial and, after delays caused by COVID-19, came to The Children’s Inn at NIH in the summer of 2021. His sister lived with him at The Inn all summer and, that September, she was the donor for Chinedu’s successful bone marrow transplant.

“I was at The Inn for about nine months,” Chinedu remembered. “It takes several months to recover after the transplant. It was a change, and I have had to readjust to things. But it was a great life-changing opportunity for me.”

Chinedu had moved to Boston in 2019, just after his cold call to NHLBI. When the day finally came for him to leave The Inn, he returned there to begin the next chapter of his life. He was an ambitious and hard-working young man who did not want to sit still any longer.

“Right now, I’m juggling work and going to school,” he explained. “Thankfully, I don’t have sickle cell anymore. That’s why I am able to do that. It would have been too much stress taking care of my health for me to do both at once.”

Chinedu is enrolled in a fully-online accounting and finance program through Southern New Hampshire University. He hopes to graduate in December 2024. At the same time, he found work as an IT project manager, a role which he says allows him the opportunity to manage budgets and financial responsibilities, but also exposes him to the tech world while he pursues his degree.

Chinedu’s life two years after his transplant is not uncommon for a young man in his mid-twenties. His activities revolve around work and school, and he is building a community of friends in Boston – anchored by his brother, whose presence lured him to the Hub four years ago. For Chinedu, though, it is life without sickle cell disease that has taken some getting used to.

Chinedu takes in the sights on a trip to Georgia

“Health-wise, I feel sound,” he said. “But it’s a huge life change. You go from being this sick person to being a healthy, normal person. You don’t know what it’s like. I spent 25 years with sickle cell disease. I don’t know what is normal, so it was a big change. Now I can do certain things that normal people do, and as I get stronger, it’s exciting. I’m still getting used to it. It’s a process.”

Chinedu began that process during his recovery at The Children’s Inn. There, he was able to make friends with other young adult residents recovering from their own life-altering procedures. He also had his mother and sister to rely on. Chinedu recalled the simple act of talking to other residents at The Inn giving him needed perspective on life and the opportunities that lay in store.

Since ending his recuperation at The Inn, Chinedu has made several short trips back. On those quick visits, he says, The Inn has remained a sanctuary for him, and he has begun giving back to others not as far along in their own medical journey.

“The Inn is still ‘A Place Like Home’ for me,” he smiled. “It’s very accommodating and conducive for anyone who needs that healing space. I have gotten to meet some other young adults and have been able to talk to them about what they are going through and what they might expect moving forward. It’s just nice to have people to talk to.”

For Chinedu, the process of making “normal” truly normal remains ongoing. But on each check-up with his medical team, he gets confirmation that the transplant has done its job and maintaining his health no longer takes so much care and anxiety. He will return to The Inn for his annual check-up next September and is excited to once again share his journey with others who may be going down the same road, he has been on for the past two years.