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Thu, Apr. 2nd, 2009, 05:22 pm

I can already tell this is going to be a long hemophilia related rant. So excuse me for being all scatter brained. I'm sure I'll jump through a lot of topics.

I'm new to this community, but not new to the hemophilia community. My father has it and my step mom is an advocate for women with bleeding disorders, she her self also has one.

I am 20 and currently pregnant with my first child. Its a boy! Which is why I have joined this community. I myself have pretty regular periods and am on the low end of normal for all my test counts and what not. But my dad is still convinced that I have a good chance of bleeding to death during labor. Pft, I'm much more worried about my little boy bleeding to death while I'm in labor.

I have some questions:

Are there any mothers of hemophiliacs on this comm?
Are there any hemophiliacs that would like to share the story of how they were born?
Are there any that are here in texas?

The thing that scares me the most is that i wont get the insurance and have the money to care for him if he is a hemophiliac. I heard the dallas treatment ceneter is awful. I was also wondering if any one knows of a state with a good treatment center. Or of a web site stating the ratings of treatment centers.

I would like to know if any are from Arizona, and how their treatment centers are.

also, i am very scared of the risk of my child getting hep c and what not from factor or a transfusion. my step moms son is like 20something and he got it. What are the odds today?


Fri, Apr. 3rd, 2009 01:55 am (UTC)

Man, I can't help you with any of those questions!

Fri, Apr. 3rd, 2009 11:03 am (UTC)

Hi :) I am a carrier of Hep C and saw the end of your post.
You'll have to check the American Red Cross site, as well as googling various Hep C sites (I'd give you links, but my old computer died recently and I haven't put the new links on the new computer) BUT.... they test the blood that is given as transfusions. After sometime in the 1980's (I was born in 1982 and the blood I was given was not tested, so sometime after that), they started testing the donated blood for things that can make the donor sick (HIV, Hep B and C, etc.). If the blood that is donated is tainted then the blood is not used. This is actually how I found out I had Hepatitis C - I donated blood and got a letter back from the American Red Cross stating that my blood had tested positive for both the virus and the antibodies.
What fun!

Sun, Apr. 5th, 2009 12:14 am (UTC)

Howdy, I live in Texas, am a hemophiliac, and am here to help - can you email me at crowerp@gmail.com

I can tell you that you have nothing to worry about with Hep C. Tests have been done for a number of years now that make product safe.

I am not a mother, but know many of them through the Texas Central Hemophilia Association. www.texcen.org

If there is anything you would like to know about the treatment centers or health insurance I am sure either I or someone could answer your questions.

Fri, Nov. 27th, 2009 04:29 am (UTC)
ljpastor: ...

it seems over due what I was going to write, so instead ill write it this way - I hope things went well or are going well in your childbirth/pregnancy.

My childbirth (im a 26 yo male) was difficult, with the complication of a possible head bleed (I needed to pried out), but here I am writing this message 26 and 2 weeks later. So, I'd say, if you have given birth, congrats and good luck, and if you havent, id say there is much hope and good luck.

Fri, Nov. 27th, 2009 07:50 pm (UTC)
evilbeef: thx

To all those with words of wisdom and encouragement:

i did have my child. a health happy baby boy! he does not have hemophilia, but he would have been such a blessing either way.

he is now 6 months and his name is eligh allistar and he is amazing!

<3to the lj community