Patient stories
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Where are they now

Wayne has recently started a new chapter in his life. He recently remarried, and he and his wife purchased a big country home on 4 acres of land in upstate New York. He also started playing music again, specifically, the drums. “I’m enjoying life,” he says, “my kids are a little older, so life is a little more independent; it’s just me and my wife.”

As far as his hemophilia is concerned, he says not much has really changed. “I’m not having as many bleeds as I used to. I have developed some aches and pains as I’ve grown older, but I think that’s just part of aging and not so much because of hemophilia.”

Wayne advises people with hemophilia to be proactive about their health. “Think about other issues beyond hemophilia—other comorbidities, other health issues, such as diabetes, heart conditions, high blood pressure. I wish I would have tried to stay a little healthier earlier in my life, I’m healthier now today than I was then, but I think I should have tried to be healthier in my 30s and 40s.”

He also urges people to consider their future retirement plans and focus on staying healthy to care for loved ones or spouses. “As we grow older, so do our loved ones, our spouses and significant others, and we need to worry about them too. We need to think about taking care of them and make sure they’re healthy too, because sometimes we have to become a caregiver to them.”

Looking toward the future, Wayne says he’s looking forward to retiring and moving somewhere warmer with access to beaches and golf nearby. “I plan on living as long as I can live and enjoying my life. I always like to tell people, ‘Try not to sweat the small stuff. The small stuff can really wear on you. You really don’t need to let the small stuff bother you.’”

Where they began »
Where are they now image : 
Where they began

Wayne Cook, president of the Coalition for Hemophilia B, Inc., father of three, golfer, car enthusiast, a person with hemophilia B, and a long-time mentor to the hemophilia B community, tells us very clearly, “I want to live a long, happy life. I want to do the things I love. I am now about to start a new chapter in my life.”

Wayne was diagnosed with hemophilia B when he was 6 years old after a head injury called attention to his bleeding disorder. At that time, he was treated with fresh frozen plasma and spent days in the hospital. Wayne reminds us, “Medicine has come a long way since then in how they diagnose and treat hemophilia B.” His initial treatment was managed by the family physician, and it wasn’t until 1985 that Wayne became a patient at a hemophilia treatment center.

“I don’t focus on hemophilia B. The quality of factor products today has helped us to lead better lives, and I am very proactive with my own care. I always take care of myself. I infuse as prevention, if I am doing something that may cause a bleed,” states Wayne. Because of his health issues, Wayne was not able to exercise much, and he developed a weight problem. This in turn led to other health problems unrelated to hemophilia B. When asked how he manages to lead such an active life anyway, Wayne said, “My hemophilia B is second nature to me now. I go for checkups every 6 months, and I am too busy with my life to let hemophilia B rule me.”

Wayne is an aging person with hemophilia B. He has lived through many life stages to get where he is today. He has other medical problems in addition to hemophilia B, including cardiology issues. Wayne has been through several surgeries. He was asked how he managed all of this while raising a family and how he is managing life now as an aging person with hemophilia B. Wayne’s strongest advice to other aging persons with hemophilia B is, “Communicate with every member of your care team all the time. Become your own advocate and insist that they speak with you and each other about your care.” Before Wayne enters into any surgery, he gets the treatment team together to discuss his physical condition, what FIX he is taking and how much. “Communication between the doctors is so important,” says Wayne. He will always stay in contact with all of his physicians and ask them if there is anything special he has to do. He keeps an ongoing list of all his medications with him at all times and stays much attuned to any signs and symptoms that he notices when they develop. “As we age, problems do develop, and letting your physician know right away is the best way to deal with them,” Wayne advises.

    When asked what advice he might have for other aging persons with hemophilia B, Wayne offered:
  • Be your own advocate in your care. Communicate everything to your physicians, as issues will develop as you age
  • Don’t be afraid to travel. Take your FIX and all your other medications with you, and if possible, investigate where you could obtain medical care if you need it, such as at a hemophilia treatment center or a hospital. Sometimes, I contact my physicians and ask if there is anything special I should do
  • I also carry a letter with me from my primary care physician explaining my health situation and the medications I take
  • Plan for your financial future. Because we have hemophilia B, we never thought we would live to be seniors, so we didn’t plan ahead. People with hemophilia B who are over age 50 really need to begin thinking about all of this. Find a financial advisor to help you. Make sure you have a will. Look into how and where you will manage your senior years. I have made all of my own plans, so I took the burden off my family
  • Get out there, get involved, and enjoy living your life to its fullest
Where are they now »