Can Anyone Help Please...

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Offline Emby

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Can Anyone Help Please...
« on: March 03, 2016, 11:21:25 AM »
Hi,

I would really appreciate if any can help me to understand.

Is it good and healthy for the heart and body to have less blood per transfusion?


 :heartred

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Offline Nomad

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Re: Can Anyone Help Please...
« Reply #1 on: March 03, 2016, 01:51:10 PM »
Envy , in general one could say yes since it is a matter of volume and the more blood you get at one time the more the heart has to deal with... For a young and healthy heart with lower ferritin this may be no problem but I can say about me, I used to get 3 blood bags every 3 weeks and at some point I switched to 2 bb every 2 weeks because I felt it to much at once. I also learned to cope with my Hb which is about 8,5-9 pre transfusion and about 11 after. But I'm 44 so kind of old and I don't need a very high level like children who are still growing up. I hope this helps you a little. Take care, K.

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Offline Emby

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Re: Can Anyone Help Please...
« Reply #2 on: March 03, 2016, 02:37:05 PM »
Thank you very much for replying. i am still confused...and no time to adjust capital letters so please excuse the grammar.

isn't that like saying a car needs to reach it's destination and need a certain amount of fuel...give it less fuel and the car doesn't reach it's destination?

what about the heart having to work overtime reaching oxygen where needed with healthy blood? if you do not have the right amount of blood you need then won't that affect physical health; lack of energy...

wouldn't that affect blood pressure?

and affect bone health?

please help.

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Offline Emby

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Re: Can Anyone Help Please...
« Reply #3 on: March 03, 2016, 07:56:03 PM »
44 is no way old...at all!




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Offline Andy Battaglia

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Re: Can Anyone Help Please...
« Reply #4 on: March 05, 2016, 05:30:51 PM »
Emby, adding blood stresses the heart. The more you add at once, the more it stresses the heart. In an ideal world, patients would transfuse once weekly, so they could take less blood and also always have fresh blood. This is not practical in most cases, though.
Andy

All we are saying is give thals a chance.

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Offline Nomad

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Re: Can Anyone Help Please...
« Reply #5 on: March 05, 2016, 06:39:29 PM »
Andy, I totally agree and I think the biggest problem to do so once a week would be the problem with finding new venes every time. Besides as a patients advocate for Germany I realized that we have a problem to define what's actually a correct transfusion "level". It depends from city to city. We have patients like me getting transfusions at Hb 8,5 -9 and other hospitals who transfusions at 11. Hb. with a post transfusion level of 14. !

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Offline Emby

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Re: Can Anyone Help Please...
« Reply #6 on: March 19, 2016, 02:55:31 PM »
Hi everyone  :heartred

Can anyone help me to understand reasons why Hb can drop quickly between transfusions please.

 :heartred

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Offline Andy Battaglia

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Re: Can Anyone Help Please...
« Reply #7 on: March 19, 2016, 03:19:05 PM »
Emby,

Antibody reactions to the blood which accelerate the destruction of red blood cells is a common reason. An overactive spleen can also be the cause. If that is the case, it may be necessary to transfuse more frequently, in order to keep the Hb above 10 at all times, as this will eventually resolve the problem in most patients, and then they can resume their normal transfusion program. Another is the age of the transfused blood. It's best if the blood is as fresh as possible when transfusing regularly.
Andy

All we are saying is give thals a chance.

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Offline Emby

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Re: Can Anyone Help Please...
« Reply #8 on: March 19, 2016, 05:34:42 PM »
Thank you Andy.

Would a sign for an overactive spleen be an enlarged spleen?

My eldest son's Hb drops quite quickly between transfusions but no enlarged spleen. No antibodies...as far as we know.

Does exercising cause drop in Hb?

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Offline Andy Battaglia

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Re: Can Anyone Help Please...
« Reply #9 on: March 20, 2016, 05:30:31 PM »
Hi Emby,

Exercise should not lower Hb. Yes, the spleen will enlarge if the blood turnover increases. I would suggest keeping an eye on the size and also any complaints from him about pain in his side.

The best thing to do is get his Hb up over 10, as this is the treatment that works best. He may need to transfuse more frequently at first, but this should resolve the issue. I think he needs to be back on his original transfusion program once this is resolved.
Andy

All we are saying is give thals a chance.

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Offline Waleed

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Re: Can Anyone Help Please...
« Reply #10 on: March 21, 2016, 04:20:22 PM »
Hi Emby,

I can tell you from my personal experience of past many years that I had no change in my Hb levels when I was doing intensive weight training exercises at gym 45-60 minutes 5 days a weeks for continuous 8 9 months. But now I am seeing hb levels dropping faster because of similar spleen issue. Please do not ask your eldest son to stop exercise, its very essential for long term health.
Waleed

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Offline Emby

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Re: Can Anyone Help Please...
« Reply #11 on: March 22, 2016, 07:05:10 PM »
Thank you Andy and Waleed.

He won't stop going....so all good!


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Offline Emby

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Re: Can Anyone Help Please...
« Reply #12 on: March 22, 2016, 07:12:42 PM »
Recently he has had transfusion at three weeks and even two weeks...but still he is not allowed the total amount his body needs.
His old treatment works for him. It needs to be given a chance again to give him a better quality of life.

Prayers to everyone's children; May Allah Most Merciful grant the best of health always. Aameen. :heartred

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Offline nice friend

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Re: Can Anyone Help Please...
« Reply #13 on: July 15, 2016, 07:14:43 PM »
Emby,
in addition to what Andy and Waleed has said above ,, i want say that,,
1) volume of blood (RBCs) is calculated to the weight of the patient,,, as far i know 10-15ml/kg is the normal blood requirement for a thal ,,, as your son is in growning age and would be gaining weight so it could be a reason behind  decrease in gap of Tx interval and increased blood requirement....

2) another reason i witnessed here in the thal centers of my city is the mixing Normal Saline in blood to make 2 blood bags out of one to overcome blood shortage ,,, tha t means less RBCs in a blood bag than a normally transfused blood bag ,,, that means it is not the accelerated hemolysis behind this ,, it is less increase in hb than a normally transfused blood bag ...  i dont know about the situation at your place but now its a common practice here ....

Ameen ... :)
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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