high ferritin level

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Offline Lena

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Re: high ferritin level
« Reply #120 on: May 15, 2010, 03:11:38 AM »
zs,

I fully agree with Andy, the only thing I would correct in your chelation plan is the "12ml" water you use to dilude your desferal. I think it is too low. Why don't you increase it to 20ml of water?
 I also take 5 vials of desferal per time but dilude it in 30ml of water.It makes it  easier to absorb.

Lena.

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Offline zs

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Re: high ferritin level
« Reply #121 on: May 23, 2010, 07:09:26 PM »
hi
I use 5 vial with 12 ml watter coz my syringe pump MS18 (graseby) dosnt accept more than 12 ml with syring 10 and if use syringe 20 the rate of infusion will be more than rate that must be so I preaper 5 vial with 15 ml watter

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Offline Rehman

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Re: high ferritin level
« Reply #122 on: May 24, 2010, 10:16:10 AM »
hi lene

how many time should take u r infusion pump for 30 ml .
THALASSEMIA  MAJOR.

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Offline nice friend

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Re: high ferritin level
« Reply #123 on: May 24, 2010, 11:57:35 AM »
zs,
i agre to Lena and Andy .. u r using much less water to dilute 5 vials of desferal ..  i have been on 5 desferals a day .. i used to take 25ml water to dilute 5 vials of desferal ...  i have the almost same kind of pump ,, mine is MEids's Infusa-T , that is also support to only upto 10ml syringe ...  but , the method i used to use 25ml water for 5 vials was to make 2 desferals in 10ml  when that finish's then replace the empty sringe with 10ml filled syringe of desferal and when that get to finish then replace that empty syringe with a 5ml filled syringe .. make sure to not get the air in ..  i posted the procedure how i used to replce syringes , in another thread somewhere , i willl try to find that and share that to you ASAP .....

Best Regards
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.

===========
Umair

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Offline zs

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Re: high ferritin level
« Reply #124 on: May 24, 2010, 02:52:21 PM »
hi umair
it take alot of time to finish 25 ml so maybe I reduse 5 vial to 4 to solve that its better way than use pump for longg time :biggrin

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Offline Lena

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Re: high ferritin level
« Reply #125 on: May 24, 2010, 05:53:41 PM »
zs,

I do not think 4 vials is a good idea -- it is too low a dosage, you will be pricked for nothing.
Can't you put the desired time to your pump? 8 or 10 or 12 hours? The rule for the pump  is every vial to be diluded to 2,5 ml water, so 5 vials goes to 12.5 ml water. Technically it is o.k to use 12 ml water but I think it is too low. Anyway, I think it is preferable  than lowering the vials to 4.


Rehman,

I have arranged the 30ml to last for 10 hours.

Lena.

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Offline nice friend

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Re: high ferritin level
« Reply #126 on: May 25, 2010, 10:58:39 AM »
zs,
i agree to wat Lena has said that it wouldn't be a good idea to reduce desferal dose .... bcoze desferal dose is subject to your body weight and your body is subject to blood need and blood need = iron  you're getting ....  desferal and blood need is subject to your body weight .. so, if you're planing to cut down desferal dose then u must cut down the blood transfusion ( or blood volume you transfuese with ) which isn't possible ( to cut the blood transfusion ) so dont cut desferal as well ..

( Andy and Lena , please correct me if i m wrong at any pint of this post ... :) )

Regards
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.

===========
Umair

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Offline Rehman

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Re: high ferritin level
« Reply #127 on: May 26, 2010, 05:51:06 PM »
Dear Lena

thanks for reply cane you send me you are complete procedure of diluting  desferal and you are pump speed timings.
becouse im using 2.5G desferal with 20 ml of water in 20ml syringe butt that take a 17 hours butt i want that is finish in  in 12 0r 14 hour.
 cane you send me a good opinion .  i have infusa T pump
THALASSEMIA  MAJOR.

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Offline Lena

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Re: high ferritin level
« Reply #128 on: May 27, 2010, 05:10:19 AM »

Rehman,

when you say 2.5G you mean 5 vials of desferal, right?
It is o.k to dilute 5 vials in 20ml water, but I do not know the brand of your infusion pump to give you instructions. You can make it to last 10-11 hours.

Lena.

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Offline Rehman

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Re: high ferritin level
« Reply #129 on: May 27, 2010, 08:57:31 AM »
Dear lena

i have Infusa T pump 
THALASSEMIA  MAJOR.

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Offline Lena

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Re: high ferritin level
« Reply #130 on: May 28, 2010, 04:50:05 PM »
Rehman,

I do not know this kind of pump, how it works. That's what I meant...whether you can adjust the time or not.

Lena.

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Offline Andy Battaglia

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Re: high ferritin level
« Reply #131 on: May 28, 2010, 05:41:22 PM »
This pump can be seen at http://www.medis.it/t.asp

I don't know enough to comment, so please advise.
Andy

All we are saying is give thals a chance.

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Offline Lena

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Re: high ferritin level
« Reply #132 on: May 29, 2010, 05:02:29 AM »
Thank you, Andy.

Rehman,

As I can see your pump has adjustments on it, so you can put the button accordingly.
A full syringe of 19-20 ml  measures 60mm, so if you want the pump to finish in 10 hours you must divide the 60mm/10hours and put the time adjustment button to 6. If you want it to finish in 12 hours, put the button to 5 and so on. I think 10-12 hours is o.k when you have a syringe of 20ml. It is enough. But if you prefer it otherwise, each time divide the 60mm with the desired time and put the button to that number.
I hope my instructins are clear.

Lena.

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Offline Dori

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Re: high ferritin level
« Reply #133 on: May 31, 2010, 08:36:35 AM »
Hey,
I have been pretty ill two weeks ago. I've had a blood transfusion last thursday. My ferritin was dropped to 400 and my hgb was dropped to 7.7 Only one bag was given. My next blood transfusion is next week thursday late morning. In the evening I got an exam and I moving blood transfusion forward is not an option and postpone it to the other week also not. So, for the first time in my life taniking up and an exam will be on one day. I will get also one bag that time. I wonder what my hgb will be by then. I know, 7.7gl/dl is a shocking mark. I was suprised myself too.

Dori
sorry for the messy message

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Offline komal

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Re: high ferritin level
« Reply #134 on: July 16, 2010, 03:29:27 PM »
Hi  Zaini,
        how  are  u?I  want  to  ask  Thumbtack  style  needles  r  available  in  Aga  khan  hospital?I  have  asked  every  where  in   surgical  markets  but  these  r  not  available.is  it  possible   to  get  through  shipment   so  what  would  the  procedure?
Komal

 

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