In a way, Alex Hilleary is lucky.
Hilleary has lived with hemophilia all his life. The rare blood disorder reduces his ability to form blood clots, which puts him at greater risk of life-threatening internal bleeding or complications due to an injury.
For decades, many people with hemophilia have lived with significantly shortened life expectancies because of a lack of adequate treatments. But thanks to modern improvements in hemophilia care, Alex is now part of a relatively recent medical phenomenon: an aging generation of hemophiliacs.
“I’m now 62 years old,” he said. “There was a time when there were no 62-year-old hemophiliacs. They didn’t even make it to their 50s.”
Hilleary is one of many older patients at the University of Minnesota Health Center for Bleeding and Clotting Disorders (CBCD). Founded in 1977, the highly regarded center has for four decades provided continuous care to hemophilia patients and others with rare bleeding and clotting diagnoses.
Over that time, patients like Hilleary have developed close relationships with their care providers, many of whom have known the patients since they were first diagnosed as children.
“We are in this together for the long haul,” said Vicky Hannemann, a nurse clinician who has been Hilleary’s care provider for the last 12 years. Hannemann joined the CBCD in 1990 to fill a maternity vacancy and has remained ever since. “We have cared for many of our patients for decades. It’s a unique and wonderful opportunity.”
Hemophilia patients often need blood transfusions to remain healthy. Early in the center’s history, Hannemann said, many hemophilia patients across the nation were dying of HIV/AIDS accidentally transmitted through contaminated blood they received at hospitals.
To make matters more challenging, some hemophilia patients feared that speaking to their friends or family about the disease could alienate them. Care providers like Hannemann were one of the few safe outlets available for those patients to talk about their condition.
“It was hard for them to talk to their family or spouses about their fears,” she said. “In many ways, we still provide that therapeutic support role, but it’s changed as the reality of hemophilia has changed.”
Today, the new reality of hemophilia care is that patients are living much longer than before, and providers are now confronting age-related complications with their patients. Strict screening procedures have made blood transfusions safer than ever before.
Over the years, the providers at the CDCD have worked with Hilleary to ensure that other medical procedures, such as colonoscopies, knee replacements and even dental visits, have gone smoothly. To reduce the risk of issues, CBCD staff partner with other doctors or specialists to create treatment plan for both before and after a procedure.
“When you get to this age and you need these procedures, your care providers start to get a little nervous about whether you’re going to bleed,” Hilleary said, laughing. “I think these plans put the doctors at ease just as much as they do the patient.”
Hemophilia is a life-long, chronic condition that affects all aspects of a person’s life. But part of caring for hemophilia patients includes helping them lead a normal life.
“As care providers, we always think that their bleeding disorder should be front and center,” said Skye Peltier, a physician assistant at the CBCD. “We have to remember that our patients really want this to be a small part of their lives.”
Peltier holds a unique position. She, too, was diagnosed with a bleeding disorder when she was just a child. Now, she works with patients just like her.
“Many people in the community know about my diagnosis, so it’s not a secret,” she said. “I think if talking about it can better help patients, then I’ll absolutely bring it up.”
That intimate knowledge and experience that both Peltier and Hannemann bring to their work has helped the CBCD provide comprehensive, ever-adapting care to patients with bleeding and clotting disorders.
Recently, during a trip to Arizona, Hilleary and his wife contemplated moving out of Minnesota for retirement. But as he thinks about his life after his career, Hilleary must also consider where he will able to receive the best-possible care for his condition. He’s not certain he could find that in Tucson, or anywhere outside the CBCD.
“That’s certainly going to factor into my retirement plans. Hemophilia is a pretty specialized disease,” Hilleary said. “I don’t know where else I could go and hope to find the experience, the long-term care and the knowledge that I’ve found at the Center for Bleeding and Clotting Disorders. It’s a top-flight care center.”