BMT for adults???

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Offline DAMHA

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BMT for adults???
« on: December 16, 2013, 09:19:57 PM »
Hi Andy,
I hope this message finds you well,
I am Ahmad Abraham, 30 yrs .
I am infrequent user but I  come back to you everytime I have a concern.
I have a severe form of thal minor with Hb of 10.3 - 11.3. No co-morbidities.
I have been following your advice about supplements, wheatgrass, resveratrol ...etc with very little improvent.

My big concern stays LACK OF ENERGY.
I am still waiting for HQK 1001 but nothing official so far....
I am thinking seriously of BMT even though I may not be the best candidate.

Dear Andy, what class of patients would I be?? 1 2 or 3? What are these classes about??
Do you recommend any center which can do BMT for such cases. I know the short term and long term effects but I really want to do it. I've got tired of being tired. At least to have somebody who is expert in the filed to sit with and talk to.

Appreciate it Andy,
Looking forward to hearing from you.
Ahmad
LIFE IS SILLY, HOWEVER TAKE IT SERIUOSLY.

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Offline Emby

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Re: BMT for adults???
« Reply #1 on: December 16, 2013, 10:46:12 PM »
Ahmad, I am also beta thal minor with similar level Hb. I recently had a blood test that showed my Vit b12 level was low. I have been feeling extremely tired lately, shortness of breath, palpitations so asked my Dr to do some blood tests. I have a follow up appointment in a days time after having some more bloods so I'll understand better how to take it from there. If vit B12 is really low then this can be severe and lead to other complications. InshaAllah, i hope this is not the case with me. Perhaps you too should have this test done.

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Offline Andy Battaglia

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Re: BMT for adults???
« Reply #2 on: December 17, 2013, 12:16:38 AM »
Hi Ahmad,

In addition to the B-12, are you taking vitamin D and do you know your level? I generally recommend a B complex 100, also but sometimes B-12 and B-6 may be needed in added amounts.

I do not think you will find any doctor willing to do a BMT on a non-transfusing patient. It is not worth the risks involved, and there is no guarantee that your Hb would be any higher than it is now post BMT. You would not fall into any of the classes they list for BMT, as you do not transfuse.
Andy

All we are saying is give thals a chance.

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Offline DAMHA

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Re: BMT for adults???
« Reply #3 on: December 18, 2013, 04:37:39 PM »
Thank you Andy and Emby.
Yes,Andy I always follow your recommendations and I am know on vitD3 2000 IU a day and on daily resveratrol and wheatgrass juice in addition to zinc 15 mg calcium 500 mg magnesium 100mg Vit E 400IU daily and a glass of beet juice every now and then with minimal if any improvement.
I am disperately waiting for HQK1001 to be Available in the market.  and I will appreciate it if u can notify us throughout the forum when this happens.
Yes Emby, I am already on B complex supplements.
Thank u guys very much.
Abraham
LIFE IS SILLY, HOWEVER TAKE IT SERIUOSLY.

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Offline Himanshu Kumar

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Re: BMT for adults???
« Reply #4 on: February 24, 2016, 02:24:24 PM »
This possibly is the first of its kind in India at least. Saket, 26 year old Thal major, was successfully transplanted in Narayana Hrudalaya in Bangalore 6 months ago. He probably is the oldest patient of Thalassemia to successfully undergo transplant. His sister was the donor. Transplant was conducted by Dr. Sunil Bhat.

Dr. Devi Shetty has also announced that NH will do at least 1 transplant for just 0.5 MN India rupees once a month.

http://timesofindia.indiatimes.com/city/bengaluru/Sisters-blood-saves-26-year-old-Thalassemia-patient/articleshow/51075491.cms
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline Sharmin

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Re: BMT for adults???
« Reply #5 on: February 24, 2016, 07:33:10 PM »
That is great news Himanshu.  I hope for ongoing success with BMT for adults.

Sharmin
Sharmin

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Offline Dharmesh

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Re: BMT for adults???
« Reply #6 on: February 25, 2016, 01:39:02 PM »
This possibly is the first of its kind in India at least. Saket, 26 year old Thal major, was successfully transplanted in Narayana Hrudalaya in Bangalore 6 months ago. He probably is the oldest patient of Thalassemia to successfully undergo transplant. His sister was the donor. Transplant was conducted by Dr. Sunil Bhat.

Dr. Devi Shetty has also announced that NH will do at least 1 transplant for just 0.5 MN India rupees once a month.

http://timesofindia.indiatimes.com/city/bengaluru/Sisters-blood-saves-26-year-old-Thalassemia-patient/articleshow/51075491.cms
This patient is aged 24 yrs but still much older. The BMT was done successfully and everything went well , told by Dr Sunil Bhat @ Seminar at my city
Start listening your body, it always gives signs

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Offline Himanshu Kumar

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Re: BMT for adults???
« Reply #7 on: February 25, 2016, 05:29:44 PM »
That is great news Himanshu.  I hope for ongoing success with BMT for adults.

Sharmin

Absolutely Sharmin. Nothing pleases me more than seeing a thal majors getting off transfusion through BMT or without transplant using novel therapy. It is important that we have multitude of options as cure so that people can pick and choose the befitting option.
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

Re: BMT for adults???
« Reply #8 on: July 07, 2016, 07:24:44 AM »
Hello guys,
Could you please help to expalin the wheatgrass juice for Thal patients? I have no idea about the meaning and the effects from wheatgrass?
'Many thanks,
Scent

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Offline Andy Battaglia

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Re: BMT for adults???
« Reply #9 on: July 09, 2016, 02:14:11 AM »
Just go to the search box on this page and search for wheatgrass. You will find 11 pages of links to posts that talk about wheatgrass.
Andy

All we are saying is give thals a chance.

 

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