Well, I made it past my 2nd Birthday with out getting a joint bleed. I did have many muscle bleeds that were not fun though. I now have a joint bleed in my left shoulder. It all started this past Thursday and I do not know why or what I did. The signs for joint bleeds diffrent then muscle bleeds. With muscle bleeds, you can see it swell and feel the warmth when you touch it. With this joint bleed however, there is no swelling and feels normal. My parents only knew something was wrong because I stopped using my arm. We did 3 doses of factor 7 Thursday night, 3 again on Saturday and 1 on Sunday. Monday I went to see my Doctor and she had an ultra sound done that confirmed it was a joint bleed and still not clotted all the way. So last night we started a more agressive treatment that includes 9 doses. The first 3 are 3 hours apart, then 3 at 4 hours apart, and finaly 3 at 6 hours apart. Thursday I have to go back to the Doctor for them to check my arm again and see if it has stopped. I will keep you posted. Talk to you soon! - Alex
I stumbled across your site because I was looking for famous hemophiliacs (all these celebrities spilling water on their head for ALS).
I am 52 years old and have severe Type A hemophilia. My daughter's son also has severe Type A. He's had a port since he was about 13 or 14 months (he's 6 now). It works fine and we've had no problems at all with it. He started with a PICC line which he promptly pulled out of his arm and gave to mom when she was preparing to transfuse him! He receives treatment prophylactically 3 times a week and is doing very well.
I tell you his story first because it is closer to what you are (or will be) going through. My story is different. I didn't start prophylaxis until about 8 or 9 years ago. With that change I may have a bleed 2 or 3 times a year! Before that I would only treat myself in response to a bleeding episode. My target joints were my elbow, knee and both ankles. I would use crutches when I went to school if I had a bleed in my knee or ankles.
When I turned 16 I joined the local volunteer fire department. We would drill using fire hoses and I climbed ladders. At 18 I became an EMT. I worked as an EMT on an ambulance in New York City for 9 years. I've been a volunteer EMT and firefighter for over 34 years. I have a Harley Davidson motorcycle that I love to ride as often as I can. I currently work as a registered nurse.
My message (and I'm sure you've heard this from the nurses and doctors): You'll be able to do what ever you want! I know my grandson will and so will you!
Reply
John Bruno
1/12/2016 03:39:46 am
Thank you Jon for sharing your story. I love hearing stories of other people with hemophilia and how they do not let it affect their lives. It is a big part of you but does not control you.