Hi Pooja,
The advice from your doctor is outdated. According to the Standrads of Care Guidelines for Thalassemia,
4.3.3 Target hemoglobin and frequency of transfusions
The goal of transfusion is to shut off erythropoiesis as much as
possible. Transfusions should generally be given at an interval of
three to four weeks. (With aging patients, a transfusion every two
weeks may be necessary.) Transfusions should be scheduled in
advance and maintained at a fixed schedule. This enables patients
and families to establish routines and will improve quality of life.
The amount of blood received on transfusion day is determined
by pre-transfusion hemoglobin levels. The target is to maintain
the pre-transfusion hemoglobin level between 9 and 10 g/dL.
Attempts to maintain pre-transfusion hemoglobin at above 10 g/
dL increase transfusion requirements and the rate of iron loading.
Transfusions should be given in an outpatient setting with an
experienced transfusion team that uses proper safety precautions
(patient/blood identification bracelets). Blood should be transfused
at 5 mL/kg per hour, and the post-transfusion hemoglobin should
not exceed 14 g/dL.
I recommend that all patients in the US register with CAF. Please contact Eileen at CAF and ask about a referral to a Thal Center of Excellence. All patients should be evaluated at one of the Centers annually, and the Center will design a program for each individual. The Centers can help to advise your local center where the child is treated.
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999
Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org