When I was first diagnosed my doctor, told me to get a medical alert bracelet, she didn't tell me why, but I truly respected her.

Tinks,
You said, "" transfusion can be fatal to us unless they remove the ig from it "
With all due respect, I've never heard or read that.
I've been on IViG for 28 years
Can you tell us where you got that information from. It just doesn;t make sense to me.
I've heard that there could be a problem giving whole blood to an individual with IgA antibodies, but hat is a fairly rare occurrence and not necessity part of CVID.

Good idea stimpy! The whole blood transfusion thing is interesting...never heard that. Scary.

Fezzy - I cry when I get high fevers lol - just didn't want ya to feel all alone on the crying thing haha ((hugs))

Fezzy I cry as well. When I don't feel good, I cry, especially with a high fever or lots of pain that just won't get better. *Hug*

I'v had two doctors tell me not to but I guess its up to you what you think .....you dont have everything in your blood that other ppl do if you where to get it all at once it could kill you it would be like them giving someone with type a type b blood I hope that was a good comparison. I guess the best thing to do is ask your doctor what they think.

You've had two doctors tell you not to what? Wear a medical alert bracelet, or to give blood. Not sure what you are referring to.

Tinks,
You said, " I'v had two doctors tell me not to but I guess its up to you what you think .....you dont have everything in your blood that other ppl do if you where to get it all at once it could kill you it would be like them giving someone with type a type b blood I hope that was a good comparison."
That simple is not true. There would be nothing harmful about it.

what part of it isnt?

Hi
I am new to this website. I am wondering if I should add Common Variable Immune Deficiency to my Medic Alert Bracelet? My dr. told me to wear one that says that I am Immunoglobulin A deficient. However, that was before my diagnosis of CVID. Thanks

Oh hi, and welcome to the group, Carol!

I just saw a specialist at Stanford today, and asked him whether we should wear bracelets. He said it's a good idea, especially if you're IgA deficient as if your IgA is lower than 6, you could have a serious reaction to a blood transfusion or even your treatment if the IgA level in it is too high. If your IgA is under 6, you should probably be on Gammaguard SD, according to what the doctor said to me today.

My understanding is that over time your body can build up antibodies to IgA which could result in the reactions I mentioned above...

MY IgA is 61. Told that is low. Is that correct? All my Ig's are low.

I think that's definitely under the normal minimum, Carol, but some people's IgA can be as low as 0. I don't know how a product with a higher IgA would affect you, but I think it wouldn't be as bad as for someone with a super-low IgA.

I'm not a doctor, so I'm just guessing from what I've learned from visiting doctors and reading websites.

ok I asked the nurse again yesterday and she said that we should not receive a transfusion in an emergency unless they remove all plasma from it because we dont have all of the things in are blood that we are suppose to have and we can have a very bad reaction causing us to stop breathing and going into cardiac arrest