Today At The Doctor


This morning we all loaded up and made the hour ride to our Hemophilia Treatment Center (HTC) to further discuss a plan of action for Anthony. Our doctor had clearly been back and forth with her superiors about our case because what we are requesting is not the ‘standard of care’. It is only with the knowledge we were able to show her that she completely agreed that our family is ready for prophylaxis before Anthony reaches the place in his life where a joint bleed is the norm. Here in Florida before a hemophiliac receives prophylaxis, which is basically treating hemophilia before a bleed occurs, they must be having joint bleeds somewhat regularly. Joint bleeds are exactly what they sound like, a bleed that occurs inside a joint causing the build up of scar tissue. You can imagine the incredible difficulty one would have maintaining mobility after something like that begins to happen. I decided a little while ago that any joint bleeding would later add to the normal issues that people with no disorders face and so I began the process of getting him put on prophylaxis before any issues. After 2 medical opinions and finally just switching HTCs altogether I found a doctor who is willing to hear me out and start him on prophylaxis once a week maybe more depending on blood work. We will be holding off on putting a port in his chest until we can be sure that A. He will be on prophylaxis for more than a couple of years or B. That his veins really can’t take the medicine and it isn’t just  a lack of factor in his system causing them to blow. I am so happy that we are making these steps toward bettering his quality of life. Hopefully it will be a long time until we spend another holiday in the ER if ever again, though I must say Arnold Palmer gives our pretty good costumes on Halloween. =] It’s been a good week; first my birthday, now finding out that he is getting prophy and next week I’ll be celebrating my greatest accomplishment, Anthony’s birthday.

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