Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Sharmin:
Hi Zaini,
I don't think that the speed is extreme - it works out to be 113 - 150 cc/hr - which is higher than the rate which my son is getting it at. I was told that more blood cells are damage when you transfuse them faster - I will find out from our clinic what the optimal speed is.
It is important to increase blood volume slowly - it is better for the heart and I believe that it makes transfusions last longer.
Let me see what I can find out,
Sharmin
Zaini:
Some times it really hurts that doctors ignore such small things which can benefit patients in big way,like this MAY BE the reason for my daughter's decreasing intervals between her transfusions,and doctors do know very well that the more transfusions the more iron over load,then why do they ignore such things,really i don't like talking to my daughter's doctor,neither who is in the ward nor her hemo,they treat me like a low-life,when ever i ask a question they look at me like i have gone nuts,they can't believe that any one beside them can know anything,it sucks.
Sharmin,do take your time,as you are already doin g too much for all of us,we are lucky to have you as a moderator :hugfriend.
Zaini.
nice friend:
hi zaini ,
i mange the speed of my blood and desferal onmy own during the Tx . i never give up , when nurse came and slow down or fast my bloood or desferal i set that back to my own suitable speed :wink :grin doesn't matter wat will happen next when they will see the difference in the speeds they setled ... those are practicing staf to a years but i m having Tx to a long time than their experience thats why i confident about wat i m doing ... about TX yeah my father told me to have less tx bocze it will load iron more on you but i discussed him that once i manageed my Hb then i will comply agressively with the chelation to take it back on normal levels and then exjade ... i think doctors thought that they are more experienced after reading books , they are but they cant feel wat a patient can feel during chelationa and Tx ... i hope i m right ....
have your say i m right or wrong ??...
Take Care
Umair
Sharmin:
Hi Zaini,
I don't want to worry you until I know for sure what the transfusion rate should be. I know that it is safe to transfuse at faster rates, but our doctor prefers the slower rate. We have an appointment on Monday so I will ask at that time.
Don't worry, nothing is too much work for my little Zainab :hugfriend I looove her new picture - she is so adorable - god bless her :)
Umair,
Make sure that you don't let your hg drop too low! Don't let it go below 90 because that would not be good for you, it could in fact damage your heart and lungs. Don't compromise your hg for lowering your iron - just keep chelating but keep your hg up!
Sharmin
Sharmin:
Hey guys,
My son's doctor has asked me whether we should begin doing bi weekly transfusions (smaller transfusions, slower rate) or whether we should continue with the monthly ones. This time he received a full transfusion (on Monday it will be 2 weeks) - so hopefully he will go another couple of weeks. After that I am considering the biweekly schedule. Do you guys think that it is a good idea?
Andy, do you have an opinion as to whether monthly or bi weekly transfusions are healthier? Are there any actual benefits of the reasons I have listed above as to why I would chose the bi weekly transfusions?
Thanks,
Sharmin
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