Dore's appt

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Offline Dori

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Re: Dore's appt
« Reply #120 on: May 25, 2009, 08:52:03 AM »
My memories about my friend Nazli

 She was also blind, because things went wrong during her birth (not enough oxygen).  :( But she was a very intelligent girl. She lived with her little sister by a fosterfamily. The foster mother brought them always to the room, asked the nurse to call her when they were finished and went back home. I mean, how can you leave before those children have their infusion? The woman who always did it, was so bad in her job. She always poked you several times and then she would call help in from a real doctor who gave you the infusion in seconds. The boy of your small group told her after some time that she was not allowed anymore to poke him. It was a fight, but he won.   :biggrin
For me there was a special protocol which said that only a real doctor must poke me, but.... I still remember that I turn the page of the local newspaper by my grandmother and I immediately saw her funeral notices. I lost the Dutch funeral notice over the years, but still have the turkish one. She was Turkish and her funeral was held in Turkey. I still have to ask a Turkish frined to translate this funeral notice.
There worked a fantastic nurse on the child department. After the infusion she gave us hot chocolade and cookies and sometimes a small present. Other nurses always thought that these presents were rubbish and she had always saved the stuff from the basket. And, she always whispered "I can do it better", but since 1990 (?) aren't nurses any longer allowed to give you an infusion.

There is one funny story I will tell an other time.

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Offline nice friend

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Re: Dore's appt
« Reply #121 on: May 25, 2009, 08:49:14 PM »
Dore,
its soo sad to hear this :sorrow , ... may her soul rest in peace ..  have courage ..

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 Manal

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Re: Dore's appt
« Reply #122 on: May 26, 2009, 04:20:33 AM »
May her memory always be in your heart :hugfriend

manal

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Offline Dori

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Re: Dore's appt
« Reply #123 on: June 04, 2009, 07:44:10 AM »
[Yesterday was a pretty difficult day, but a frien brought a small sunshine in my day to announce a little more about the new Shakira era. Music is good for the oul (so long as it is "good" music ofcourse)

But I wanted to say that I did enter a new chapter in my life during the night:
My right feet went from normal to a swollen and itching right feet. The only thing what came to my mind was: putting anaesthesia salve (Emla) on it and a towel on my feet so that I could not touch that feet.

When I told my father he wanted me to call the hospital. I refuse to do that, so he called a family member who is a doctor. I will be called back and then I must tell my story.

I do believe it's the Exjade. Especially that feet feels often numb and "sleeping" (= it doesn't get enough oxygen/blood flow)I know it's pretty strange, but my foot really act like this. On the other side: I have no prove that Exjade can cause this problem....but this problem occured after I started with Exjade. Accidentally?

Since 4pm yesterday I have a terrible nausea. So I just took an anti-nausea pill and then I will take the orange juice drink with 1500mg Exjade. Exactly 40mg/kg. I have plans to lower the dosage, if I will get good results back at friday. Does someone has any idea what my new dosage must be?

Muchas gracias,

Dore
p.s. Shortly after I post the message in Zaini's topic I heard the good message that my notebook was working again. I lost quite a bit, but I dont feel sorry. My pc works faster and I am going to take better care about it. My messenger is even working, so better communication. Hmm, it's a very old version so you can not send me files.
p.s. The Netherlands & UK having TODAY the elections for the European Parliament!!!
[In the Netherlands it's FORBIDDEN to held elections on Sundays!!!)

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Offline Zaini

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Re: Dore's appt
« Reply #124 on: June 04, 2009, 08:03:37 AM »
Dore,

When was the last time you checked your ferritin,as far as i remember it was around 1200? if thats the case i think you should lower your dose,40 mg/kg is a very high dose,lets see what Andy or other moderators think about it.

Zaini.
^*^Xaini^*^

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Offline nice friend

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Re: Dore's appt
« Reply #125 on: June 04, 2009, 09:32:40 AM »
Dore,
[ its an opinion only ] : you're on extremely high dose , you must decrease it bcoze you have a history of allergies from Chelators ( Deferiprone, Desferal and as far i remember from Exjade as well ) and now you are trying the extreme dose of it .. 40mg/kg is the latest finding and i think it is for the severe ironn overload condition, you must go back on  30mg/kg dose .... i think that was working fine for you , so no need to increase the dose ...
about swollen feet : when i was having this probleme my doc told me to dip feet in warm Salt added water for 10-15 minutes and then spread cream ( vit-e cream or any cream ) it , ( i used olive oil for this purpose ) ... if it is the samething as mine was then i hope that, it wil help you  ...

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 Manal

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Re: Dore's appt
« Reply #126 on: June 04, 2009, 10:32:06 AM »
Dore, I too agree that you should lower it to 30mg/kg especially that your ferritin is not that high

manal

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Offline Andy Battaglia

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Re: Dore's appt
« Reply #127 on: June 04, 2009, 02:02:35 PM »
What has been said is correct. 40 mg/kg of Exjade is used when the ferritin is very high AND it is not responding to a lower daily dose. This dosage should be reserved for those cases only.
Andy

All we are saying is give thals a chance.

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Offline Dori

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Re: Dore's appt
« Reply #128 on: June 04, 2009, 02:14:32 PM »
Hmmm, this time I was the brave patient who accept doctor's order. I will play again my own doc.
I will weight myself now. Oops, I lost an other kilo. Even with clothes it's only 40,7 kilo. I guess my weight is 40,0 x 30 =1200. There are only pills of 500mg left, so I will go to 1000mg.

Hopefully I will feel better with this.

Muchas gracias,

Dore
p.s. Umair, do you mean salt water or soda water?

Edit: I have used 40mg/kg for the past 3 months. Recently I restarted with documenting the things what are happening in "Medical Land". I got sometimes I hard time to remember everything...
« Last Edit: June 04, 2009, 02:29:39 PM by Door »

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Offline nice friend

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Re: Dore's appt
« Reply #129 on: June 04, 2009, 03:39:09 PM »
Dore,
Soda Water for dipping feet  :rotfl :rotfl :rotfl .. just kidding ....

Dore, i was talking abt salt and water , all you have to do is to take warm water in a tub/drum and then put Salt in that , and then dipp the feet in it for 10-15 minutes .... and after that take out your feet and cover them with a towel until they come to normal temprature , then spread any cream on that ( Vit-E cream or Olive oil , i used to spread olive oil  ) ... feel free to ask if i missed anything ...

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 Dori

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Re: Dore's appt
« Reply #130 on: June 04, 2009, 07:57:18 PM »
Got it. Salt water is used to sterile things; so in this case probably an infection in the feet. I will do it after my meeting at Saturday eve. I wanted to say smth else but it slipped out of my mind.....

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Offline nice friend

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Re: Dore's appt
« Reply #131 on: June 04, 2009, 09:13:34 PM »
Dore,
you're right ,  my doc told me to do that when i was having swollen feet and pple here sugested me to do an echo or mri of that to find if there's any clot  ... but i were lazy to do that and that vanished with the therap doc told ... i dont know wat was that but i cured after that therapy ....
best of luck to you dore for appointements and lab results ..

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

*

Offline Manal

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Re: Dore's appt
« Reply #132 on: June 04, 2009, 10:06:01 PM »
Quote
Salt water is used to sterile things; so in this case probably an infection in the feet

Dore, the function of salt for swollen legs is not to sterile but rather to get rid of the water retenion. The salty water will "draw" the water out of your feet. This is done through osmosis.

manal

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Offline Dori

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Re: Dore's appt
« Reply #133 on: June 16, 2009, 11:53:03 AM »
Tiold you I experience pain after blood transfusions? I found this, but I am not sure if they talk about "mine pain". If not, it may still an interesting clinical trial

Quote
Thalassemia is an inherited blood disorder that can result in mild to severe anemia. Regular blood transfusions, which refresh the healthy red blood cell supply, are one treatment for thalassemia. People with thalassemia often experience pain, but the exact source of pain remains unknown. This study will examine how pain varies during the blood transfusion cycle in people with thalassemia who are treated with regular blood transfusions.

http://clinicaltrials.gov/ct2/show/NCT00872833?term=blood+transfusion&rank=6

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Offline Dori

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Re: Dore's appt
« Reply #134 on: June 25, 2009, 09:05:18 AM »
Orginally post in swollen legs:

Thank you. I had. The only thing what went really wrong, was that they couldn't find my blood in the fridge. It turned out that the lab had forgotten to match my blood. It took a bit longer than half an hour  :dunno  That's something I don't understand. Normally I must give my blood 72 hours before (now it was 48 hours) so that they can match the blood very good. Btw I am 99% sure that it's a fault from the nurse who did poke me. I remember now that she didn't bring my blood away as cito. She just continue sitting there.

Anyway, Tomorrow (friday) I will meet my doctor If someone has any thought about what I should ask too: 'Tell me'!!!!

Dore
p.s. the blood had a very dark red colour!! I couldn't stop looking at it. If you ask me; it must be super fresh blood... :thumbs
I didn't see this colour for a long, long time. The pain was minimal and i didn't need painkillers. Sometimes it goes well :)


 

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