I was diagnosed at age 11. At that time, before my diagnosis, I was very active and participated in more contact sports, such as volleyball. When I hit my knee on the playground at school, a ripple effect happened that changed my life. My knee swelled up to the size of a softball and was extremely painful! I lived in small town Iowa, and the doctors were not sure what was happening to me. The first thing they tried was aspirating my knee. OUCH!!! If you don't know what that is... basically, sticking a giant needle into the knee joint and extracting fluid. This did not help in the least. They took X-rays, which showed nothing. Next step, orthoscopic, exploratory surgery... to take a closer look at the inside of my knee to hopefully find out what was happening. Well... the day before surgery, during the pre-op blood work, the found a hiccup in my bleeding times. Surgery was cancelled and more blood tests were ordered. At this point they knew I had a bleeding disorder, I was given Fresh Frozen Plazma to stop the bleeding into my knee. I was then sent to Mayo Clinic in Minnesota for more blood tests. It was there I was diagnosed with Moderate Hemophilia A. At that time, I had 4% FVIII in my blood. I was switched to Cryoprecipitate for bleeds, until recombinate products came out. Because my knee joint was delayed in getting the appropriate treatment for such a long time, I now have damaged cartilage. My doctors told me, it is not healthy for me to participate in the sports that I loved. It was suggested to me to try something less stressful, like golf. I have been playing ever since and loving every minute of golf.
The reason I bring this up: The ideas of what we SHOULD and SHOULD NOT do as people with hemophilia have changed dramatically throughout the years. We now know that being active, and increasing your muscle strength, can actually reduce the amount of bleeds. I am living proof. I never dreamed I would be able to run on my damaged knee... but here I am preparing for a marathon. Don't take this the wrong way, this has taken LOTS of careful training, starting with swimming, which most people with hemophilia know by now, is the safest form of exercise. I have worked with my team of experts to make sure I don't hurt myself in the process of becoming and staying healthy.
It was 5 years ago that my husband, Jeff, and I started to change our lifestyle and become healthier people. After swimming for several months, I switched to cycling, then eventually, when my leg muscles were strong enough, running. I have lost about 45 pounds so far, and I can definitely tell a difference in they way my knee reacts to things. (BTW, Jeff has lost over 100 pounds!) During my 1st few 5K races, I would wear my knee brace and factor up prior to the run. My muscle strength is such that now I can run 5K's without a brace or factor. I do still wear my brace and factor prior to longer runs, or if I feel like my knee might act up. I will also factor up before longer cycling events, but no knee brace for cycling. It causes more harm than good on the bike, for me.
No comments:
Post a Comment