Discussion Forums > General Chatter
frustrated
Sharmin:
Thank you Andy and Zaini :hugfriend
I think the blood test on Tuesday will tell a lot too. His eyes don't appear yellow - which is something that his doctor told me to watch out for. He also told us to watch for a change in his urine color (if it is brown or darker than what it usually is with desferal) as that would be a sign of hemolysis.
The medical staff in Oakland is amazing and it is much easier getting information from them than it is getting it here. The records that they keep are unbelievable. They have asked for a bilirubin each month, maybe it will be easier for me to get his bilirubin levels from them.
Sharmin
Andy Battaglia:
No yellow in the eyes is very good so I doubt there is anything unusual going on with hemolysis. I am really looking forward to hearing the results of his upcoming tests. I considered asking about combination desferal and Exjade at the NYC symposium, but thought that perhaps we should wait to see more results of this small trial, and also didn't know if I would be announcing something that shouldn't yet be announced.
Sharmin:
Andy,
Personally, I think that the combination has helped us get the iron levels down faster than using one chelator alone. Using Exjade 7X a week has allowed us to get away with 5X a week of desferal. If we had desferal alone he would need to be on it much more in order to get his levels down. The last ferritin (1249) suggests that the levels are coming down. His appearance (as you have seen) also suggests that the levels are down.
Sharmin
cherieann:
Oh Sharmin My love and thoughts are with you both.
I do understand your fustration.
Sharmin:
Andy,
His total bilirubin in October was 14 (measured during the time that he was able to last 5 weeks without tx). January 5th his bilirubin was 21 and Wednesday February 4th his bilirubin was 26. Normal bilirubin range is (0 - 19umol). The direct bilirubin value is normally 5 this time it was 6 - but it was within the normal range (0 - 7umol)
Does that sound high?
Thank you Andy,
Sharmin
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