I'm like you:
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.
“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.
Disease Related Links
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.
Treatment Related Links
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.
Education Related Links
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.
Support Related Links
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!”