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A History of Hemophilia A: A Bleeder’s Story (Part 2)

Editor: here is part two of our recurring story of surviving hemophilia. We had planned to be able to wrap up this series within a month or so of our first episode, but illness has taken our writer away from the keyboard for the better part of three weeks. We will stretch out the series until it is complete.

“Today I think I will concentrate on the hemophilia side of my life. It has had it’s ups and downs but treatment has improved immeasurably and so it is a story with a good ending, although we haven’t yet reached the end of the story. We’ve already covered the fact that at age five I was wheelchair bound. After gaining the use of my legs, I quickly became a much more normal little boy. I can remember as a pre-teen taking miles-long walks with my friends on the roads around my rural home, riding my bike prolifically, playing baseball in the neighborhood, and even a little football. We would hike through the woods and catch crayfish in the creek that ran behind my house. There was a fairly good change of elevation behind my house and someone had the brilliant idea of cutting the bottom off some of the vines that climbed the trees and we would spend hours in the summers, days really, swinging on our vines out over the lower ground below us.

“All of these activities held the potential for bleeding and I bled rather frequently. When I bled I would ‘factor up’ and treat until the bleeding stopped. This was usually just a few days but could easily stretch to a week or two as I would be anxious to get moving again and often reinjure myself. Near the end of my senior year in high school, in early 1985, I learned of my diagnosis with HIV. This changed my attitudes about clotting factor and I was reluctant to treat even the most major bleeds. This led to much more bleeding than I had experienced as a pre-teen and a young teen. I would use the hated ice and compression, rest and elevation to try to bring these bleeds to conclusion, but inevitably I would end up treating with factor. This was very difficult for me to adjust to. I was afraid of the factor, even though I had already contracted HIV, and I was afraid not to treat my bleeds.

“Lucky for me it wasn’t terribly long before heat-treated factor became available, which cut down the risk of transmission and enabled me to feel a lot safer taking the clotting factor. Still, everything wasn’t correct with the world. We started prophylactic treatment with clotting factor at some point that I can’t now remember, and so I got some protection against bleeding spontaneously. This is perhaps the most important thing I can say to anyone who uses clotting factor today to prevent bleeding: get a PK study completed. This study checks the clotting factor available in your system at various times after you have taken a full dose of factor. This enables you to see how factor affects you as an individual. Let me tell you, we all vary a great deal in the way we respond to clotting factor. It wasn’t until after I suffered a subdural hematoma in early 2015 that we did a comprehensive PK study and found that I had been undertreating by almost 50% of what I should have been treating to truly prevent bleeding. I thought, ‘I’m a bleeder. I’m going to bleed.’ Let me tell you that isn’t necessarily so. Prior to the adjustment of my clotting factor I would bleed maybe once or twice a month. After the adjustment I didn’t bleed for almost 4 years.

“Today, my bleeding is much better controlled, but I am starting to bleed again occasionally. I think this current bleeding trend has a lot more to do with the joint damage that was effected by years of bleeding into my knees and ankles, than it has to do with the amount of clotting factor I’m taking. I’m on a good, stable clotting factor dose using one of the extended half-life products that I take every four days. I have the option of filling in with a half dose if either my activity level or my pain level indicate that I might bleed thr0ugh my treatment regimen. This works very well for me so long as I recognize the potential bleed and treat accordingly. Most of the bleeds I’ve had in the last year or two have come about in situations where I feel like I should have treated PRN instead of waiting for my next prophy dose. It has been several months now since my last bleed. I feel pretty good about my treatment going forward.

“Next time I’ll tell you a bit more about my experiences with complications of hemophilia, focusing more on HIV.”

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