Hi this is saddam please suggest me ...........

If I am able to get any I will definitely let you know - the hospital rations it out so carefully here that it is difficult to get any extra. 

I wonder if there is another way to enlist the help of medical centres close to Bappy so that he can get exjade.

Saddam,

C'mon. Dont worry so much.

Enlarged spleen and gall bladder are our issues. Mostly for us who were on ineaequate transfusion.(my Hb never exceeded 5gms).

Dont worry much. You are getting good advise here. Talk to your doctor to decide on your spleen.

Coming to your yellow eyes, my eyes were always 'very yellow'. Some people would give me lot of unsolicited advice to get the blood tests for Hep A.
As I know, why it was so, it didnt bother me.

Dont worry, be happy .

Rashmi,

That is such a lovely attitude.  I am very glad that you are all reaching out and asking questions - that is the only way to make things better.  Bappy you are doing well right now - with the improvements in your health that Andy has indicated you can live a better life and remain healthy. 

Thalassemia can be managed, and as I have mentioned in another post - the goal now is not just survival - the goal is to feel good and energetic.  It is to be healthy, vital and have a good quality of life with some maintenance. 

With such low hemoglobins people feel fatigued, unwell and their quality of life is low as well.  As I have mentioned earlier, it leads to increased spleen size, heart troubles, increased hemolysis and increased iron absorption. 

I hope that both of you will discuss keeping your hemoglobin higher for the future - I would say 10 and above - but keeping it above 9.5 is acceptable. 

I know that it is difficult when the decisions are not in your hands, we sometimes struggle with hospital staff but if you are informed and have valid information to back you up doctors begin to listen.   

Lena is the perfect example of how a patient can take their health into their own hands and live a healthy and balanced life.  She is maintaining good hemoglobin levels and near normal/if not normal ferritin levels.  That is my aim for my son - and in whatever way that we contribute - that is thalpal's aim for all of you as well. 

Sharmin

Sharmin.

Thank you,

At 45 years of age, with a kid and family, in a place like where I reside, it is not possible to maintain an HB of more than 9 gms, for me at least. Pre-transfusion Hb most of the time shows at 7 (luckily this time it was 8)...even while on a 4 weekly transfusion regime. Advice was for a 3 weekly regime....but no, quite difficult for me.

As a child, till infact 30 years of my live, I was not on transfusion.

Once or twice, it even went down to 4......but still I survived.

My parents never panicked or made me feel nervous at any point.
I had a very normal childhood......but my mom took great care of me.

True the spleen size became big, my bones are very bad today, I get exhausted easily And I live with the worst pain on earth.....but still the spirit of living is more important.

Most people around don't even know that I go through the monthly pains of transfuision, that I have such a bad back etc.

Worrying will not do Bappy any good. He ll feel more sick.

All thals and their parents must realized that there is a thing called "THE PROTECTIVE LIFE FORCE OF THE UNIVERSE'. If we can attune our lives to it through our thoughts, words and actions.....then the protection we receive is immense and inconceivable.

To take a few deep breaths and surrender to the protective life force is very imp. for a happy heathy life...to overcome our problems.

Doctors are there. We must pray to attact the best doctors and the best advice.

Thalpal is there, Andy is there and beautiful people like you are there, no here too:)

hopefully next day I'll be able to go for transfusion and  also able to get a Discussion with doctor . I want to keep my HB% up to 10 to avoid operation .

In Bangladesh there are many problems to get blood ..... in case i have to pay extra to both staff and doctor  to get 2nd or 3rd transfusion . which is main cause of my inability. Thanks for your inspiring massage. I'll give you update......

Dear friend,
I've visited my hemoglobin specialist on 17 November and we has been a discussion with him . my doctor give me two option after read my report ,he suggested me to remove my spleen or keep hemoglobin up to 10%-12% minimum . I choose 2nd option . i'm trying to maintain my HB% 10-12 minimum .This month i take 4 blood transfusion and  I manage desirox for two month .


Dear friend i need your prayer and help. friend my request to everyone if you have extra medicine please help me . friend please please help me .

Thanks for your support

I wish you the best Sadam. Splenectomy was the usual thing to do in early days. I had my spleen removed when 2,5 years old which was too soon, however my growth was normal. Nowadays things have changed and doctors suggest not to remove your spleen as long as it does not annoy you. Keeping an Hb of above 10 is required non the less. Goog luck to you.

Bappy,

I am constantly praying for you - I think you made the right choice.  I wish I had extra medication to sent you.  I will try to help in whatever way that I can.

Sharmin