Vincent Rusak of New Kensington, PA, traveled extensively during his 26-year career as an expert electronic service technician. For 15 of those years, he was also a regular blood donor in his community.
His father’s quadruple bypass surgery, as well as a deep compassion for his fellow man, were Vince's motivation for contributing to his local blood banks every six to nine months. Little did he know that this selfless habit would someday save his life.
One day 13 years ago, Vince went to give blood as usual. “But when they pricked my finger and put the blood drop in that liquid, it was supposed to sink, but mine floated,” he said.
“They thought it was because I had no iron, that I was iron deficient.” The extensive blood work that followed told a different story. Vince never had any of the symptoms typically associated with bone marrow failure disease, so his MDS diagnosis came as a serious shock. He clearly remembers being terrified when he heard how short his life expectancy would be, but that’s because his doctor at the time had left out a crucial detail – if he decided against getting treatment, the result would be a dramatically abbreviated life. He wasn't going to let that happen.
Vince's doctors tried a variety of treatments over the years. While some were beneficial, others didn’t work. For a lot of people, it would have been a disappointing period of trial and error, but this man of faith always believed that God had a plan for him.
Positive results came when his doctor began treating him with Revlimid on and off for five years. Whenever his blood counts looked good, the treatment was stopped, but Vince occasionally still needed blood transfusions.
More recently, his blood counts dropped yet again, so in addition to increasing his transfusions, he started taking a different drug this year. Even though he tires easily, Vince is now doing well on Vidaza and is able to keep up with his favorite activities.
Like so many patients, Vince initially struggled with depression. But as soon as he pulled out of it, he went online in search of information.
He became involved in an MDS forum that introduced him to the Foundation, and that, he says, was a game changer. He credits the Foundation with grounding him, first with education about MDS and bone marrow failure in general, and then by inclusion in its caring community.
“I learned so much at those patient and family conferences, from the caregivers and other patients and from the wonderful medical experts who speak there. Everyone should go to at least a couple of these conferences.” That’s where Vince learned about the importance of self-advocacy, including how to find the right doctor and prepare for his appointments with his health care team.
Vince has several layers of support, but the first person he turned to when he was diagnosed with MDS was his youngest daughter Jade, whose own little girl is now the center of their attention.
Jade is still a pillar of support for her father. Since she lives nearby, she also keeps dad beaming and busy helping her care for her toddler.
As a 13-year survivor, Vincent believes that in addition to family, he’s had several distinct advantages in learning how to cope with his chronic disease – the support of the Foundation, the constant companionship of his beloved pets and his abiding faith in God.
Updates
Vincent continues to volunteer and enjoy his grandchildren!
Vincent continues to enjoy life! He recently spent four months in Florida, returning to his family and friends as optimistic as ever.
Although two of the drugs he had been taking no longer are effective, he is looking forward to adding Luspatercept to reduce the need for frequent blood transfusions.
Vincent looks back at the 16 years since his diagnosis, still saying, “It’s been a blessing.” He took care of his dad as Alzheimer’s disease progressed. Then he volunteered many hours with the regional children’s hospital and continues to volunteer with the Heroes Hall. He’s been able to help out with some daycare for his grandchildren, and still has “Pap Sleepovers” every weekend! Even though he needs to nap every day, he has enough energy to keep giving back.
Vincent’s advice to patients and families is this: “The Lord helps anybody through any trial, little or big!”