Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Zaini:
Andy,
What i don't get is that while her hb was normal,why was she feeling so tired and down in the last week,and she was looking so pale that i was assuming that her hb must be low,She was so down that she kept saying "mama something is happening inside me",and this scared me.She couldn't explain what exactly was wrong but i felt like she was feeling shortness of breath.I hope carao will keep helping her and we can increase her transfusion intervals,may be a couple of transfusions can help us make sure about it.
Zaini.
Zaini:
Hi Lloyd,
From where should i order more bottles of carao? My daughter is taking 4 spoons per day and she is on her third bottle.
Zaini.
Andy Battaglia:
Zaini,
Paleness and shortness of breath are both signs of hemolysis taking place. Of course, it could be something else unrelated to thal, but a rise in reticulocyte count would be related to hemolysis, also. And this brings up a question for thals. Can you tell when hemolysis is taking place? Is there something inside that you can feel?
Sharmin:
Zaini,
What you describe has also occurred with my son on couple of occassions. He says that he cannot express what is going on, and he also seems to be out of breath. His doctor however says that his lungs are perfectly clear, his O2 is 100%, and his lung capacity is not only normal but it is above average. I am also confused by this and it also scared me. He described this feeling last week when his hg was 10.4. Maybe as Andy says the kids are experiencing the symptoms of hemolysis - and maybe the feel it more as they get closer to a hemoglobin of 10.
Have other thals ever noticed this?
Sharmin
Manal:
I am so much interested in getting an answer to your question Andy ? Maybe older thal can help us in this. Does hemolysis takes place daily with the same rate???
I know Zaini and Sharmin how frightening this sentence can be, i wish you will never have this situation again. :hugfriend :hugfriend
manal
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