Discussion Forums > Thalassemia Major

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Linda528:
Hi everyone,
I'm Linda and I'm 24yrs old. I have beta-thal major but some drs. think I have intermedia. I normally go for 2 units of transfusion once a yr but this year I had 3 transfusion within 4 months. I have no idea what is going on with my body. I normally run on a 7 hemagloblin lvl but when it gets to around 4 I always end up with a transfusion. I have major antibodies problems in getting a blood match. Does anyone else have that problem? Last time it took 2 days to find a match for me and they draw too much blood out, I was declared neutropenic. I am now tagged in the blood bank system for anitbodies and they have to find a close match for me as possible. I had a bad transfusion reaction when I had my gallbladder removed. I also have a fairly enlarged spleen and my iron lvl is about to hit the high lvls. I may have to start xjade (sp?) but I don't know because we are wanting  ttc#2. I have a 21months old lil boy who has the beta-thal trait. Well that is a lil bit about me. :)

Linda528:
Hi everyone,
I'm Linda and I'm 24yrs old. I have beta-thal major but some drs. think I have intermedia. I normally go for 2 units of transfusion once a yr but this year I had 3 transfusion within 4 months. I have no idea what is going on with my body. I normally run on a 7 hemagloblin lvl but when it gets to around 4 I always end up with a transfusion. I have major antibodies problems in getting a blood match. Does anyone else have that problem? Last time it took 2 days to find a match for me and they draw too much blood out, I was declared neutropenic. I am now tagged in the blood bank system for anitbodies and they have to find a close match for me as possible. I had a bad transfusion reaction when I had my gallbladder removed. I also have a fairly enlarged spleen and my iron lvl is about to hit the high lvls. I may have to start xjade (sp?) but I don't know because we are wanting  ttc#2. I have a 21months old lil boy who has the beta-thal trait. Well that is a lil bit about me.

jade:
Hi Linda

Welcome on board.

The fact that your hb maintains at 7 most of time and also you need transfusion only once a year points to intermedia rather than major.  For the antibodies no one can answer your questions better than Sharmin.  Wish you good health. 

Take care
Jade

Linda528:
Thanks,

That's what my husband and my son's hematologist say by what my conditions are, but my 2 hematologists I have both say it's major. I have no idea what they are using to consider me major. I have an appt. next week so I guess I will ask my dr.

Zaini:
Hi Linda,

Welcome on the forum,glad to have you here,with 1 transfusion per year,you are definitely an intermedia,as majors require more frequent transfusions,at your age a major would require transfusion every two or three weeks,and your hb of 7 also indicates that you are an intermedia.

Our moderator Sharmin's son has also faced antibody problems,do you get genotype matched blood ? its really necessary to get genotype matched blood to avoid antibodies,well to completely avoid it one should get genotyping done before getting first transfusion,but now that you have it,its good to have genotype matched blood to avoid more complications,Are you getting any treatment for antibodies? Sharmin's son was given a round or two of Rituximab to clear the antibodies.She can tell you more about that.

When were you diagnosed with thal? Since what age did you start getting transfusion once a year? Do you know what your ferritin level is? Although ferritin level is not a good indicator of iron overload in organs specially in Intermedias,you should get MRI done to check how much iron you have in organs.

Please feel free to ask any question you have in mind.:)

Zaini.

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