Discussion Forums > Thalassemia Major

I feel i have reached the end of my road.....

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Hope:
Ambreen, I am soo touched by your post. I had tears in m y eyes when I read the post. Then as I read more posts, I felt very happy that you have got back your inner strength. I pray that you stay strong and be a guide for new parents like us.

Sajid: Please take care of your ferritin. Here is US, many people have tried combination therapy (L1(on compassionate ground)+ Desferral) to quickly reduce iron overload. As you know that high ferritin is not good for your heart, please talk to your doctor to find out if you can use the combination therapy. I am soo worried for you. please do take care.

Andy Battaglia:
Sajid,

It is quite likely that your doctor is correct, as we see this over and over with iron overloaded patients, once they start regular chelation. I believe it is a good sign as it means the iron in the body tissue and organs is being released so that it can be chelated. This is normally a short term rise, and the fact that you are taking more desferal these days is the most relevant thing here.

Sajid, I am going to be frank with you. You are at an age when heart failure can happen quickly in the iron overloaded patient. Your diligence in chelating now  is the most important thing. I agree that you should also reconsider L1 in combination with desferal, as nothing will work better to lower your high iron load. Even if you can take a small dose of L1 daily (I know a patient who is almost 40 who has done this along with desferal and has out survived her peers in a situation where few reach her age) you will greatly enhance the chelation taking place in your body, and since L1 works so much better than desferal at removing heart iron, if at all possible, you should take a second look at L1 if your white cells are at a  normal level. Please also convince your mom that IP6 had nothing to do with the amoeba illness you previously contracted. That can ONLY be contracted from water containing the amoeba and this is common in warmer climates (even Florida).

We want to see you stick around brother.

§ãJ¡Ð ساجد:
Hi everyone!

Thanks for your encouraging words.

I'm trying my best to chelate provided the supply of Desferal is continuous. There was a gap of about a month before I was able to get them again due to supply issues, holidays and December tragedy. I'm due to get another stock for upcoming weeks; let's see if I am able to get some tomorrow.

My doctor isn't much impressed with my WBC counts to start L1 because she just manages the transfusions and goes by the book for chelation; however, we have a visiting (hemo) who wants to give it a shot (probably for experimental reasons) but that was before I got my latest S.F and my doctor had postponed his request till the result had come. I wonder if she will do it when the next time he visits us. ???

Zaini:

--- Quote ---We want to see you stick around brother.
--- End quote ---

Please take care Sajid,you are an exceptionally intelligent and brave person,i am looking forward to meeting you someday .

ZAINI.

Ambareen:
Salaamz to all....

 This is the first time that im reading about combining EXJADE and desrafal together, coz in our centre its said to be dangerous to do that...!!!

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