mybloodbrothers

I had and appointment with a surgon yesterday he has let it up to me on deciding on when I wanted to get a hip replacement. He said that because of hemophilia it will only last 8-12 years . I am 34 and would like to put it off as long as I can handle the pain. It is also possible to get an infection and lose my hip joint completly. I would be interested in hearing other peoples experiences and if options other than a traditional hip replacement are available.

Thank you
Kevin

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Kevin,

I understand your reluctance. I was first told I should have my knees replaced in 1976, but for a variety of reasons including not liking what they considered a 'success' at the time and a severe case of cowardice, I waited until 1992. It's not an easy decision. I know knees aren't the same as hips, but like an old Wendy's or KFC commercial said, "parts are parts."

I was puzzled by your doctor's statement about hemophilia causing a shorter than normal lifespan for the prosthesis. When my knees were done my orthopedic surgeon felt they should last the usual fifteen to twenty years. As it is, I had to have the left one replaced in 2006 because of an infection, but my current doctor (the first one retired) thinks the right one is easily good for another five years. I did a Google search for 'hip replacements in hemophiliacs' and a few of the articles did say that the lifespan of the prosthesis was shorter for us, but others reported very good results. The one thing I noticed was that the more pessimistic articles studied guys who had their operations in the 70s and 80s. Procedures and/or materials should be vastly different now.

I can't tell you what to do because that decision depends on a multitude of factors (not just VIII or IX) that you, your loved ones and doctors will have to weigh; but I can tell you that when I finally decided it was time it was, for me, one of the best decisions I've made. (And one of the most frightening.)

Good luck, and like Red Green says, I'm pulling for you. We're all in this together.

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Thanks Guy for your addvise I really needed to hear from another hemophiliac. I am going for my clinic visit this week and will discuss it farther with my hemotologist and infectious disease doctors.

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I had my first hip replacement on 4/23/2009.
I would start by looking around for the best surgeon. I'm not so sure that statement your surgeon made about lasting only 8-12 years is accurate; I certainly hope it isn't... My surgeon had done knee & hip replacements on several hemophiliacs before me; that was beneficial. My HTC referred me to my surgeon even though I had to use a different hematologist who had Dr.'s rights at my surgery hospital.
You also need a very good hematologist with experience in hemophilia to become totally involed in the surgery process. My hematologist was in the surgical prep area when I had my surgery; making sure my factor was being administered properly. She also visited me in my hosp. room. I only stayed in the hospital for 72 hours after surgery; then went straight home. I chose to have my hip replaced in Kansas City ( 3 hours from home) instead of going with a commmunity hospital/ orthopedist/ hematologist. I'm glad I did; it was worth the drive.
I had a total knee replacement in 2004. I never have gotten an infection in that joint. I always take 2000 mg of Amoxicillin 1 hour before my 6-month dental cleanings. I haven't got any infection in my new hip either. My new hip had very little swelling from surgery and the incision was small; was taped closed; not stapled or stitched on the outside. I love my new hip and knee.
Good luck...

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Your Child Has Hemophlia!

I will never forget the day those words were spoken to me! All three times!

I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!

I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!

How did you feel when your son was diagnoised? How did you know your child had a bleed?

Make it a great day!
Lori

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