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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018

54942 Posts in 5836 Topics by 6084 Members
Latest Member: ritaferreira

A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: What’s normal for an abnormal person?  (Read 620 times)
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« on: July 08, 2018, 07:16:21 PM »

Hello all,

I’m a 21 year old beta thalassemia major patient living in Michigan being treated at the U of M. I get transfused every 2 weeks and get 2 units of blood (every transfusion varies how much mL of blood I get but the average is about 650 mL). I had siblings and cousins who were diagnosed with thalassemia as well, but were fortunate enough to have siblings who were matched with them. I don’t know any beta thal. major patients other than myself and I’ve never had an idea of what a normal, or ideal, range of Hb and ferritin should be. My pre-transfusion Hb last time was 7.9 and I usually hover around the 8 Hb range right before a transfusion. My ferritin currently is at about 3200. I have always been around these ranges for as long as I can remember... I currently take 1,800 mg of Jadenu a day along with 60mL of desferal 5 days a week.  Are counts like these normal or is there more I can do or should be doing less? Thank you all and everybody stay strong <3
Andy Battaglia
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Location: In my heart, Maldives

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Posts: 8531

Will thal rule you or will you rule thal?

« Reply #1 on: July 14, 2018, 03:14:48 PM »

Your pre-transfusion Hb is lower than what is recommended, a minimum of 9 but a goal of 10. Your ferritin is also high. How long have you been using the combination chelation and what is your weight? Have you had MRI's done of your heart and liver to measure your true iron status?

If you do want to know more thals, you can also register with and follow the Cooley's Anemia Foundation. It's a very good organization that can often help give direction in terms of care from doctors who are more thal friendly. 
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
Fax: 212-279-5999

Patient Services Manager
Eileen Scott


All we are saying is give thals a chance.
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