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majolica

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I have developed some antibodies from a previous transfusion. My question is...Do I need that information on my ID bracelet? My hematologist said that I only need to mention my bleeding disorder that I acquired 5 years ago. I thought such info is important if a bleeder ever needs a transfusion. The doctor said that you all get the antibody info anyway!

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It does not hurt to supply this information. Antibody titers can drop off over time and some antibodies can drop below detectable levels while still being dangerous for transfusion. Some antibodies never drop below detectable levels. Some antibodies are not really dangerous for transfusion. Since you don't know which you have, it is safest to let the people caring for you know that you have the antibodies. Very few poeple actually encode these in their alert bracelets.

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If ou have developed blood group antibodies it would be prudent to have a card from your hospital/MD which states what they are, esp if there is more than one. As mentioned above, some abs may grow weaker with time and lack of stimulation. Any transfusion service you encounter would appreciate this knowledge, esp prior to working up your specimen.

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I have ANTI-FYA NEGATIVE. I had 5 units of blood 10 years ago for upper GI bleeding from a unknown source. I also have a monoclonal antibody, but I ACQUIRED it with (AWVD) acquired von willebrand disease 5 years after the transfusion. Is it possible to get these from the transfusion? Why would the hematologist say the antibodies mean nothing when i had a severe reaction to IVIG immunglobulins? Thats where the lab stated the antibody when I was screened for a surgery. Is it normal to not mention these antibodies to patients? Or , does it not matter because the screening is preformed for every surgery in case of a transfusion?

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I have ANTI-FYA NEGATIVE. I had 5 units of blood 10 years ago for upper GI bleeding from a unknown source. I also have a monoclonal antibody, but I ACQUIRED it with (AWVD) acquired von willebrand disease 5 years after the transfusion. Is it possible to get these from the transfusion? Why would the hematologist say the antibodies mean nothing when i had a severe reaction to IVIG immunglobulins? Thats where the lab stated the antibody when I was screened for a surgery. Is it normal to not mention these antibodies to patients? Or , does it not matter because the screening is preformed for every surgery in case of a transfusion?

Also,

The hematologist said that I have a inhibitor. I have IgG lambda monoclonal antibody. But, I asked if the mgus caused the bleeding disorder, he said..don't know! What I have read...there is a connection!

http://www.slm-hematology.com/uploads/media/Management_of_Acquired_Hemophilia_A_Literature_Review.pdf

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Dear Majolica

the anti-Fya and the other antibody are two quite different things - if indeed you have an anti-Fya. It is not clear from what you say whether you have an antibody - anti-Fya; or whether you are negative for the Fya antigen (Fya negative).

If you have an anti-Fya you could have received this from a previous transfusion, or indeed from a previous pregnancy. The fact of having this antibody will not cause you any harm unless you receive blood that is Fya positive. The lab would of course always do a repeat antibody screen before giving you blood, but some antibodies can become undetectable with time, althought they are still there, and can still cause you to react badly to the blood. So it would be VERY helpful to have this written on a card which you keep in your wallet, and that you could show to hospital staff if you have another bleed. On the other hand, an anti-Fya would NOT cause you to react badly to IvIg, nor does it have any relationship to your von Willlebrand's disease. As for the other antibody, it is not a blood group antibody and I am not qualified to say. Sorry.

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Hi Anna,

Thanks for all your info. I did ask if I had that anti-fya antibody and the Hemo doctor said yes.. So, yes I assume I got it from my transfusion 10 years ago. But, the big mystery is, why did I have a severe reaction to the IVIG/steriods . There has to be something in the immunglobulins. Any thoughts!

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Thank you as well! The doctor did mention the reaction could of been from immunglobulin overload. I know IVIG has known to contain viruses. They did give me very high doses for 5 days straight. So, Anna said the anti-fya is not a blood antibody? Did not understand what she meant by that. I did not have a transfusion at the surgery, just the IVIG. They gave me 10 years ago 5 units packed red cells. So, is that where someone developes the antibody? The antibody screen was negative then. When I was in the ICU 10 years ago, rbc was 2.75 and Hg 5.1... Bounced right back and never thought of it again till 5 years ago. Went to doctor becasue I felt bad and the last 5 years have been a nighmare.

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Dear Majolica

Just to sort out a confusion. I said the anti-Fya IS an blood group antibody. It is the other antibody that is not. You could have aquired this anti-Fya antibody from a previous pregnancy or a transfusion. It is important to understand that having a blood group antibody (like anti-Fya) is not an illness and does not cause an illness. It can cause problems only if you receive red cell transfusions in the future and the antibody has not been taken into account (which it should be). It cannot cause a reaction to IvIg. There are many possible reasons why someone can react to IvIg; it would depend on what else was going on at the time, maybe you were also receiving other medication too...If you are worried about it happening again, you really do need to speak to your doctor about this because he is the only person who has all the information necessary to tie together all the possible threads. hope that clears it up a bit

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Thank you, I understood all that, but there has not been a reason for the severe IVIG reaction. I was not any med at the time, very confusing to say the least. The doctor could or would not answer these questions. But, the doctor won't even allow me to get my teeth cleaned or have fillings without the IVIG....I will never have that posion in me again!! I can't believe they would try that crap on me again!! Thanks again for taking your time to try to help sort this out, but I guess if I am lucky...I hope I will never need that stuff again.

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Majolica,

If I could elaborate on the importance of supplying as much history as you are aware of; with respect to your Anti-Fya, in the event that over time this antibody falls to a concentration below what is detectable and no history is known then your blood bank will result the antibody screen as negative and you may recieve packed red cells that are positive for the Fya antigen, which will cause a potential reaction. This reaction will come about because when the immune system recognizes a antigen upon which it was previously sensitized it retains memory and proceeds to produce IgG class antibodies immediately and this is why antibody history is so important. Additionally, I have seen cases where antibodies were generated as a result of IVIG sesitization directed against a component of the IgG of the IVIG; in other words your immune system can develope antibodies against foreign antibodies. An example of this is the development of Anti-IgA derected against the antibody, IgA. I hope this helps a little and does not add more confusion.:):)

Edited by rravkin@aol.com
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