The Carao Trial - How effective is it & who benefits most etc.

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Offline Manal

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #45 on: October 29, 2008, 10:31:01 AM »
Thanks Sharmin, makes a lot of sense :wink

Puja, thanks for your advice, i will  keep monitering.

manal

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Offline Zaini

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #46 on: October 29, 2008, 11:55:11 AM »
Hi,

Doctor at the hospital once told me that if you transfuse a patient with hb of above 10,it puts pressure on heart which is not good,i don't know if it's entirely true,just sharing it.And the head nurse told me that a bag of blood should be transfused with in 2 hours,or bacterias get developed in the blood,is that correct?

Zaini.
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Offline Sharmin

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #47 on: October 29, 2008, 04:41:45 PM »
Hi friends,

i
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f bi monthly was such a beneficial thing, then why would world wide doctors prescribe it monthly or when the body needs, there has to be a catch to it or else all the kids would have gone thru bi monthly.

I think that this standard is used for a few reasons - one is so that patients do not receive unlimited volumes of blood - so 4 weeks and a level between 9 - 10 has been adapted - also for consistency between different hospitals and centers.  Also, being that around fours weeks is also the life span of red cells it makes sense that way too. 

However, some of the prominent centers are recommending bi weekly transfusions - I have spoken with some parents being seen in New York - and they have told me that their doctors have recommended txs every 2 weeks for optimal health.  These parents have also said that they have had no complications with their children and their children are never tired because they are never low.  Numerous patients in my city also elect to do this - some adults even come in for a small tx once a week because it works best with their work or university schedules.  Some people prefer the more frequent txs because they find that their visits are shorter on any given tx day. 

The other thing you can look at is exposure to more donors - I don't think you are getting exposed to more donors because after a certain weight (depending on the size of units) patients get more than one unit anyway.  Therefore if you were to receive blood from a single unit with each transfusion - you are being exposed to the same number of donors.  If a patient were to receive 8cc of blood per kg of their body weight every two weeks - then they would average 16cc/kg every four weeks. 

The upside of this is that patients would not have symptoms of low hg, the red blood cells would not age all at once near 4 weeks post tx becoming less efficient (I am guessing that this actually happens), the body would marrow would not be active at all - so blood volume would not increase - (increased blood volume can lead to pulmonary hypertension).  Also, with each transfusion you are giving a smaller volume of blood - so you are in fact putting less pressure on the heart by not changing the volume too much at once. 

The negative effects would be - as Puja has mentioned - more pokes - veins getting tired from being poked more frequently because they haven't had a chance to rest.  More days in the hospital, more cross match tests etc.  Problems with standardizing what volume of blood each patient should have.  Also, the emotional effect on children can be bigger if they are in the hospital more often - twice as much. 

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Doctor at the hospital once told me that if you transfuse a patient with hb of above 10,it puts pressure on heart which is not good,i don't know if it's entirely true,just sharing it.

From what I have been told, getting large volumes of blood at one time (greater than 20cc/kg) can put pressure on the heart.  The hemoglobin itself does not affect it.  If we think about it - within the first hour after tx begins the hemoglobin is above 100 - and then we continue to transfuse without causing damage to the heart (am I making sense?)  So I can't see why transfusing while hg is above 100 can put pressure on the heart.  I will ask our doctor though, maybe it is something that I am not able to understand.  Our doctor often emphasizes that the less volume we transfuse at one time the less likely we are to increase the pressure on the heart.  For this reason also, the smaller bi weekly transfusions may be good. 

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Also one time I came across a mother who said that the blood transfusion has to be done very slowly over a period of 6 hours or more, cos according to her the faster you give (in govt hospitals they are short of resourcres as in beds) the faster the hb comes down. Meaning if the transfusion has been given over a peiod of 4 to 6 hrs the next required blood transfusion  requirement will be over a month and if it is faster then her daughter needed transfusion with in 21 days.

I think that this is true, because you are causing less damage to the red blood cells when you infuse them slower.  Also, it is much easier on the body because you are increasing the volume slower.  It is also good for people who have antibodies, slow rate, small transfusions. 

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And the head nurse told me that a bag of blood should be transfused with in 2 hours,or bacterias get developed in the blood,is that correct?

Zaini, the standard here is to hang a bag of blood for a maximum of four hours.  After the four hours, they hang a new unit and change the tubing as well.  Maybe there is a difference because of the process they use to store the blood. 

My main reason to begin thinking about - bi weekly tx - is wondering what is best for our growing children throughout the month.  Also, how to reduce pressure the the heart and lungs due to larger blood volumes. 

My thought is that, if as the hg decreases below 100 - (an some retics can be found soon after the hg decreases below 98) - that the marrow may begin to increase the blood volume on top of that the kids get on big blast of transfused blood (15 - 20cc/kg) which can be 400cc+ in these little children (for my son it is around 534cc).  I worry that the increased volume (as small as it may be at this stage) that the body creates + transfused blood volume - may put pressure on the heart. 

Also, in the week before tx - the small amount of retic ing that the kids may do (it tends to be very little in thal majors 2% to 8% retics at this stage) and the increased hemolysis during this time may put the kids at some risk of fragments building up over time. 

I can see that most people do well with the four week schedule - but if there is room for improvement and general well being maybe this is worth discussing with our doctors.  I will ask Oakland during our next visit. 

I think my post has gotten pretty long.....so I had better sign off  :wink

Sharmin


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Offline Sharmin

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #48 on: October 29, 2008, 04:44:43 PM »
Zaini,

At what speed do they generally transfuse Zainab?  For my son it is 90cc/hr.  When he had his antibody they had slowed it down to 80cc/hr. 

Sharmin   :hugfriend
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Offline Zaini

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #49 on: October 30, 2008, 04:06:46 AM »
Sharmin,

They don't actually set any speed,450 ml of blood is transfused in approx 3 to 4 hours,should we ask to increase the duration?

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I think that this is true, because you are causing less damage to the red blood cells when you infuse them slower.  Also, it is much easier on the body because you are increasing the volume slower.  It is also good for people who have antibodies, slow rate, small transfusions. 

May be this was the reason of decreased duration between her transfusions? ??? initially when we started to go for transfusions,they use to put a device with the blood bag to set the speed/hour,but now they don't.Should i ask them to start using the device again? and if yes then what should be the infusion rate?

Zaini.
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Offline Sharmin

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #50 on: October 30, 2008, 04:15:48 AM »
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
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Offline Zaini

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #51 on: October 30, 2008, 10:03:33 AM »
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.
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Offline nice friend

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #52 on: October 30, 2008, 11:47:10 AM »
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
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

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Umair

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Offline Sharmin

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #53 on: October 30, 2008, 02:59:03 PM »
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
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Offline Sharmin

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #54 on: October 31, 2008, 08:26:55 PM »
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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Offline Andy Battaglia

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #55 on: October 31, 2008, 09:26:00 PM »
Monthly rather than bi-weekly is mostly a matter of convenience. I think that twice monthly makes more sense if it is possible. It guards against having any period when the Hb is lower than the minimum you want to see. I think the condition of the veins is a big factor so it may rely on how easy it is to find a vein twice a month.
Andy

All we are saying is give thals a chance.

Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #56 on: November 01, 2008, 01:31:59 AM »
Hi Zaini,

I read your posts in this thread, seriously my blood boiled when I read the attitude of the doctors in Pakistan. I think they don't know enough or they do not update themselves accordingly. I think the latter is true. This is ridiculous behavior.

« Last Edit: November 01, 2008, 01:51:17 AM by Canadian_Family »
Regards.

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Offline Zaini

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #57 on: November 01, 2008, 07:37:38 PM »
Thanks C.F,

That's the way it is,i hav an appointment with my daughter's hemo on 11th november, and i am sure we are not going to get anything informative out of her,it's like a foot ball game,when ever i ask ward doctor anything,he kicks me towards hemotologist ( ask dr zehra first),and when i ask anything to her hemo she says ( dr anwar i.e the ward doctor must know it well),and still she had the nerves to yell at me when i didn't visit her for 5 months once,i don't get it why she insists on visiting her when she doesnt give any updates or information,her per visit fee is rupees 1000 in which i can buy two weeks supply of desferal,why waste hard earned money?
And this time i am going to tell her that,once she utters the words "ask dr anwar" i am going to tell her to not ever ask us to visit her.My hubby works literally like a slave to give us a good life,this man is loosing precious years of his life,and for what,for her holiday trips to America?

I am sorry i got off track.

Zaini.
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Kathy11

Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #58 on: November 01, 2008, 10:26:52 PM »
Hi Zaini.
YOU never have to apologize for your truth.
it a safe way to vent your concern.
you have the right to get answers to your daughters'medical condition.

You and your husband are doing the best you can. :clap :clap

Take care with love from  kathy

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Offline Ayesha

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Re: The Carao Trial - How effective is it & who benefits most etc.
« Reply #59 on: November 02, 2008, 08:49:34 AM »
Zaini: well its really sad to hear all that happening to you, me and Salman are patients of Dr. Usman, I think you should contact him? he doesn't force or yell at us for visiting him, we don't visit him for 6 months or sometimes a year, its okay with him... he never insisted us..

he also never tell us anything new  :rotfl but he never ask you for unwanted visits, i guess all the hematologist know less than patients :P its okay naa :D

we have damn good knowledge and blessings like, net, thalpal, friends, andy, sharmin hehe what not? we will use them if hematologist did'nt tell, its ok na :)

i remember when Salman was on tablets Fosamax, its bit expensive, i asked my friends were for alternate, and I got to know about Reventa, its cheap and same formula, I asked Dr. Usman and he happily agreed to me ;d

cool n calm doctor!

-Ayesha

 

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