9 years of red blood transfusions

[slip up 2]

Met a fellow to-day, who has MDS and has had transfusions for 9 years and he is still laughing.....no other medication only red blood....

[Neil Cuadra]

That's amazing. Any idea how many transfusions he's gotten over the 9 years? If it's a lot and he hasn't needed treatment for iron overload then I wonder where all the iron in that transfused blood went!

[slip up 2]

He said once a week sometimes 2 a week and the odd time once every 2 weeks....I asked him if he had ever taken any other medication..did not want to ask about iron overload...but he said no other...he is Asian, so maybe lots of black tea....I even asked the nurse she said that he was right...

[Neel]

9 yrs and once every week makes it arnd 400-450 units, or 120 liters of blood. Thats huge and without any complication. I guess the doctors have to reconsider there thinking in regard to iron over load , maybe iron over load is the fear created by the doctors then, or maybe his boddy is natural iron chealator.

Regards,

Neel

[Helen Robinson]

Please do not be tempted to ignore iron overload. My husband had 152 transfusions over eight years and he chelated with desferal. After a cardiac arrest he was checked to see if the iron had affected his heart muscle and it was ok. Unfortunately microscopic iron was interfering with the electric signals in the heart and the tachicardia did not respond to treatment. He left us five months ago after 49 years of a wonderful marriage.

Please do all you can to reduce your iron. We tried everything including exjade which caused hepatitus.

Best wishes to everyone on their journey. Enjoy every moment you can and keep positive and smiling.

Helen

[celebrations]

Neel and others,
"or maybe his boddy is natural iron chealator."
Was this a joke or have you ever heard sth. about this?
Then please tell me !!!

I know an American with RARS who has been on transfusions for 13years now.
He has got over 700 tx now, taking Exjade every day to chelate. His frequecy is 8-10 days.
I myself had my 101st transfusion a week ago. Frequency all 15-18 days, taking Exjade 1000mg/d.

Iron-overload is a very serious problem when transfusion dependent.
Iron chelation will save your life.

Best wishes, Bergit

[freedom99]

I can't believe the stories of all thes RBC transfusions.
Totally radical.
What a wacky disease and some wacky bodies.
Makes us all a bit more positive and stand up and be counted amongst the living.

[navn29]

Hey NEEl! has ur father responded to d treatment....pls let me knw d address of d doc if he's been a help. My bro is a case of MPN-UC

[Lori. K]

I've been getting Blood transfusions every 4 weeks for red blood cells for 12 years now!!