Discussion Forums > Thalassemia Major

whats a healty hb.

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Danielle:
It's a little difficult to explain, but if an Intermedia can maintain without getting transfused, it would be better that way.  The more transfusions you receive, the more you are cutting off your own supply, and the more dependent you will become on transfusions.  So, many Intermedias choose to deal with being at a low hemoglobin.  Thal Majors, on the other hand, have no choice, as their hemoglobin would just continue to drop if they didn't get transfused.  Many Thal Intermedias seem to adjust to the low hgb, even though they can be tired, but Thal Majors cannot.   :dunno

For some reason, that sounded a lot better in my head.   :rotfl

Andy Battaglia:
Manal,

This is the trade off that thal intermedias make. They have to live with a lower Hb but are also able to avoid transfusions and the related problems. In the US, the only thals that show bone deformities now are intermedias, as majors are treated early enough in life to keep this from happening. Transfusion is seen as a last resort therapy and avoided whenever possible, so intermedias have to make a choice that compares the quality of their lives to the problems involved with transfusion (iron overload, blood borne illnesses, reactions, etc.) and decide which they are more willing to live with. As we sometimes see, as is the case with Jean, the time may come when that choice changes as the quality of life deteriorates. Since majors will not survive without transfusions, it is recommended that they keep their Hb high enough to suppress the bone marrow activity so that it does not expand the bones.

Manal:
Thanks Danielle


Thanks Andy, guess it is hard to decide. :huh

Manal

jzd24:
Manal,
     It is kind of confusing, but there comes a point in some intermedias lives when it is an easy decision. The key word is some, I can't speak for all. When I finally found out the options (late in life for me), I debated still for some years as to what to do. If I had known how much better I would have felt, I would have gotten transfusions much earlier. But, since I didn't know that, I continued wondering as my quality of life diminished. I didn't have much help or information. There was a point when I just had to do something because my quality of life was really going downhill. Luckily then, I found the help I needed.
     So, while it is not an easy decision to make, there is at least information that can help you and your son when the time comes. Three things that I think are important to look for are: health status (is he chronically sick with infections?), bone pain/changes, and activity level. Of course knowledgeable doctors have other things they look for also.
     At least you know there is something that will be able to help him if and when he needs it. That's got to be reasuring, even though it is an involved treatment. But there IS something that will help immensely - healthy blood! He has a bright future ahead of him. He has an intelligent mother who knows a lot about thalassemia, and there are new, positive changes in treatment, and hopefully new research findings that will help in the future.
    I don't want to make it sound like a walk in the park, but knowing that transfusions can really help if needed, is a comforting thought. My thoughts are with you, Manal, and your son. Love, Jean   

Manal:
Thanks Jean so much :hugfriend :hugfriend. You are right ,it is a comforting thought to know that there will be still something to be done. Can't imagine if i didn't know you guys , how life would be???

Take care

Manal

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