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Updates........

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Offline Bobby

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Re: Updates........
« Reply #15 on: August 06, 2008, 01:20:18 AM »
Good to here everyone's better.  :jumping
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Offline olivia mary

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Re: Updates........
« Reply #16 on: August 11, 2008, 02:24:06 PM »
Hi everyone....
Thank you Bobby for your well wishes  :hugfriend ..I have a question....to date, Olivia has had only 2 tx...we are going to Oakland in a few days and I was wondering....since Olivia has been tx, does this mean she will always need to be tx? or if there is another medication like hydroxyurea can we try her on it?.....I've heard that once tx are started there is no going back...is this true?

Thanks for your help....
Kathleen
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Offline Andy Battaglia

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Re: Updates........
« Reply #17 on: August 11, 2008, 03:20:53 PM »
When majors have taken part in trials for hemoglobin inducers, they have had to stop transfusing in order for the bone marrow to become active again so that the Hb inducer can work, so it is possible to re-activate the marrow, but it may take a few months to get it working fully again. Dr Vichinsky will be able to tell you more, including information about other Hb inducing drugs.
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Andy

All we are saying is give thals a chance.
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Offline sah

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Re: Updates........
« Reply #18 on: August 15, 2008, 06:22:04 PM »
What about Olivia's appointment with Dr.Vichinsky Kathleen?Please update us.Hope it was positive.
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Offline olivia mary

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Re: Updates........
« Reply #19 on: August 15, 2008, 08:11:17 PM »
Hi everyone...we just got back from Oakland.....Well let me start off by saying that Dr. Vichinsky is a wonderful person.....I feel that I have received so much more information from him in 1 day then I have since Olivia has been dx....Olivia had a squid done, a echo, bone age and  a skull x-ray....Her echo was normal...bone age was good her skull x-ray showed moderate thickening. We discussed options for Olivia which were tx, medication and bone marrow transplant....Dr V feels Like Olivia is leaning more toward the severe side of thal interm. He is going to recommend to my drs here in Phoenix that Olivia is on a 4 week tx schedule....for 6 months...not a tx and then see her in 6 weeks he wants to maintain her hb above a 9 for 6 months and then we will stop no matter how good she feels and than see how she does as far as quality of life...mood...any facial changes, change in activity for another 6 months to see if she really has a difference from the tx. Olivia'2 ferritin is in the low 400's, she has olny had 2 tx to date....also Dr. V has put her on a low iron diet and has recommended that she takes a multi vitiman daily...I have more to tell but i have to now go to pick up my kids from school.....talk more later....Kathleen
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Offline sah

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Re: Updates........
« Reply #20 on: August 16, 2008, 12:22:04 PM »
Thanks Kathleen.what did Dr.vichinsky said about hydroxurea and other hb inducers?Is tx the only option?
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Offline Manal

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Re: Updates........
« Reply #21 on: August 18, 2008, 08:12:55 PM »
Hi Kathleen

I have two questions, first does 6 months transfusion will make Olivia dependent  on blood transfusion? Second i don't get Dr. Vichinsky's point is seeing the difference between Olivia's state with and without transfusion?? I mean definetly when someone is having a high Hb will be better in all prespectives than a lower one so what is he expecting or waiting for? Hope you get my point?

What is his explaination on why did the hydrea stopped having an effect on Olivia's Hb ??

manal









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Offline orry78

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Re: Updates........
« Reply #22 on: August 18, 2008, 11:35:45 PM »
Hi Andy, i'm new in your forum..i am diagnosed with a thalassemia intermedia. And every 3 months my doctor check all my HB, RBC, WBC, Ferritin and all. He also told me that i have an enlarged spleen and enlarged liver. But the only medicine he's always giving me is Folic acid.
 
Could you explain to me further if Thalassemia Intermedia is curable? and is Folic Acid the only medicine that could help me? I hope you could elaborate to me further.

Thanks!
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Kathy11

Re: Updates........
« Reply #23 on: August 19, 2008, 03:39:57 AM »
Some encouraging news at last.
After talking milk thistles for three months  my liver functions  still high but has improved,My blood glucose stabilized.
I made some alterations with my medications and supplement it with herbal treatment it seems to be working.
My doctor was impress with my progress,

Thank-you Andy for suggesting Milk thistle after my last blood tests which was very grimmed.

I will continue and hopefully it will get better and better. Wow finally :biggrin :biggrin,

Thank-you all for your kindness and help all through my hard times,  you are the best.

Kathy
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Offline Andy Battaglia

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Re: Updates........
« Reply #24 on: August 19, 2008, 04:00:34 AM »
Kathy,


It's really good to hear that you're feeling a little better. Milk thistle is a good liver and blood purifier, and also can help rebuild liver tissue. For most of history, mankind relied on herbal and natural remedies for illness and there is quite a bit we can do for ourselves once we learn how.
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Andy

All we are saying is give thals a chance.
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Offline Andy Battaglia

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Re: Updates........
« Reply #25 on: August 19, 2008, 04:03:04 AM »
Hi orry78,

Are you beta thal intermedia or alpha thal. If it is alpha, there isn't a whole lot that can be done besides folic acid but if you are beta thal, there are a few things you can try to improve your health. Let me know which you are and I will advise further.
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Andy

All we are saying is give thals a chance.
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Offline Andy Battaglia

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Re: Updates........
« Reply #26 on: August 19, 2008, 04:11:16 AM »
Hi Manal,

If transfusions are stopped, bone marrow activity will resume within three months and will return to the level of activity and output that existed before transfusions began. Maintaining a normal hemoglobin level greatly reduces the bone marrow activity but once the Hb drops, the activity does resume.

I think people should pay special attention to the recommendation of a low iron diet.
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Andy

All we are saying is give thals a chance.
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Offline §ãJ¡Ð ساجد

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Re: Updates........
« Reply #27 on: August 19, 2008, 11:04:26 AM »
I hope Olivia starts making her own blood soon :pray

Kathy!

I'm so happy to hear that it's working for you. :)

By the way, how much improvement in the levels did you see?
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Offline orry78

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Re: Updates........
« Reply #28 on: August 19, 2008, 06:22:35 PM »
Hi Andy, that i need to ask my doctor if i am a beta thal or alpha thal. My next check up is due next month so i could actually ask him then.

what worries me the most is that, why my liver and spleen is always enlarged. sometimes it is hurting me. Is there anything that i can do to decreased or to stop the enlargement of my liver and spleen? every check-up i'm giving blood specimen to do Renal function test, Electrolytes, liver function test, calcium, uric acid and CBC.
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Kathy11

Re: Updates........
« Reply #29 on: August 19, 2008, 11:52:13 PM »
Hi Sajid. :biggrin
Thanks-you,Re- your ????-
   For me it was enough just to see the decrease in the liver enzymes level  ,cholestrol  was manageable and so was my blood glucose level.the ratio and risks of cardiac arrest has reduced.Let say a 25% reduction not bad for three months    of talking Milk thistles.I also stopped taking some of the medications which I thought was harming my liver the most, I believe that its a matter of trial and error untill its right.

It's a big improvement because I was so worried after my last  blood test result which was in May '08

I feel better in myself  just getting  better results. :cheer :cheer :cheer :cheer :cheer
Kathy
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