Hi it was our first time attending and I'll try my best to think of the key points. Our thal major daughter is 3 years old so the important things may differ from family to family.
Notes:
10 years post BMT;
endocrine problems 70%
cardiovascular 10-30%
hepatic 40%
BMT: 5% death risk and 87% total cure rate
for annual MRIs:
Liver iron <7mg/g
Above 15-20 dangerous
No safe level in liver iron
Heart affected by missed exjade
Not enough after liver uses it up, no protection left for heart
Missing even 10% of exjade (I.e 3 days in a month) is basically like not taking it... It will not work this way.
Low T2* means high heart iron
More than >30 Ms is good
20-30 cautious
10-20 dangerous
<10 fatal
Pancreas iron overloading happens before heart; early warning sign
These are some quick notes I made on my
Phone... Please feel free to ask any other questions -I'll try my best to remember
