New here: patient with severe hemolytic anemia

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Offline Sara76

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New here: patient with severe hemolytic anemia
« on: October 03, 2013, 02:13:27 PM »
First, I just want to say, WOW!  Andy, what you have done here in memory of your friend, Lisa, is amazing!  Not only do you have an incredible breadth of knowledge of thalassemia, but your ability to clearly communicate this information to others, I believe, is unprecedented.  I am blown away by your dedication and commitment to this cause. How lucky we are to have you!!!
A little bit about myself - I was diagnosed shortly after birth with severe hemolytic anemia.  Though the etiology of my anemia is different from thalassemia, many of the complications are quite similar.  I'm here to learn more about transfusion therapy, as I have a hb of 6. I have a history of transfusion dependency until my splenectomy at age 2. I'm in my 40's and since my splenectomy have only had transfusions during times of infection/fever/ virus and pregnancy. I am currently struggling with lower energy levels despite the same hb level I have maintained most of my life. I am also investigating the different iron chelation options as I have recently been informed that I have iron overload. This is the 3rd time in my life that I've had to be treated for increased iron stores. I will be posting some questions on the iron page.
Thank you to all who have shared their experiences and knowledge in an effort to help others!
 :smiley :smiley
« Last Edit: September 09, 2014, 11:04:13 PM by Sara76 »

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Offline Andy Battaglia

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Re: New here: patient with pyruvate kinase deficiency
« Reply #1 on: October 03, 2013, 06:56:57 PM »
Hi Suelou,

I am somewhat familiar with your condition, and one of our members who has become inactive due to other obligations has previously run a forum on PKD. As you said, the mechanics differ as to what happens to red blood cells, but the outcome is similar. What I have observed with thal intermedias, and your condition would most resemble intermedia, is that as they age, many have had to opt for transfusions to improve the quality of life. With today's chelators, this has become a much more common choice. I would suggest really examining your day to day life. Is the quality of your life greatly impacted by low Hb? If so, transfusions should be considered.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: New here: patient with pyruvate kinase deficiency
« Reply #2 on: October 04, 2013, 07:26:52 AM »
Hi Suelou,

Can Wheatgrass help here, Andy?

Though I am not aware about PKD but thought that it may help.
Start listening your body, it always gives signs

 

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