Patient stories
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Where are they now

A friend recently said to Jeff K, “Every time I look at you on Facebook, you’re somewhere different.”

“I’m as active as I’ve ever been,” the now 51-year-old says. “I had my best summer of golf and lowered my handicap two strokes.” Jeff and his wife Char (short for Charlene) and their two sons—Alec, 18, and Austin, 15—stay very active, whether it’s boating at the lake or traveling to the boys’ swim meets.

Jeff has had several major orthopedic surgeries to date. He had his ankle fused at age 32 and a total hip replacement at age 41. Both were conditions resulting from less-rigorous treatment of his hemophilia B in his youth. Today, he is very proactive with his factor treatment, which has helped him keep up his active lifestyle. “There is no reason to live in pain or to keep you from doing what you want. Don’t let your hemophilia keep you from fixing your joints. I would do both surgeries again tomorrow to get my life back with no pain! Living on painkillers is no way to go through life.”

According to Jeff, having a positive attitude is the key. “Hemophilia does not run my life, I do. I know my limitations and I live my life the way I want. I only think of my hemophilia when I do get a bleed.” In Jeff’s mind it’s just like having allergies, you treat as-needed and go on with life. “It can be real easy to feel sorry for oneself, but that doesn’t do anyone any good. Life with hemophilia is not easy, but it was the hand I was dealt, and you have to play it the best you can. As a funeral director, I have seen many people whose lives are worse than mine.”

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

Jeff K, a 46-year-old with moderate hemophilia B from Minnesota, stays active and youthful by taking advantage of the great outdoors. Jeff loves spending time boating and coaching soccer teams.

As a result of growing up before much was known about hemophilia treatment, many older men did not have the opportunity to maintain a preventive treatment regimen or even treat bleeds as quickly as was needed. When Jeff was growing up, treating preventively was not an option. “My late teens and early 20s were during the dark years when blood supplies were not always safe.” His treatment protocol was “just enough to get by.” Today, Jeff believes that being proactive and treating preventively is a smart idea. Before certain events, such as a trip to Disney World with his family, he infuses factor because he knows he will be doing a lot of walking and carrying luggage. He also infuses factor before doing outdoor chores like raking leaves.

Jeff K said that his ankle fusion and hip replacement (at 32 and 41 years old, respectively) “changed his life.” Although he did not experience much resistance from his doctors, they did disagree on the age at which he should have the surgeries done. Jeff, however, felt that it was the right time for him and worked with his doctors to fulfill his wishes.

Jeff K maintains his perspective by realizing that there is always someone out there worse off.

Where are they now »