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MDS Myelodysplastic syndromes

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  #1  
Old Sun Jan 12, 2014, 09:54 AM
NCrous NCrous is offline
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Heart transplant & MDS

My father, 51, was diagnosed with MDS on 3/12/2013. The doctors told him he only has 6 months to live because there is no treatment available for him because he has had a heart transplant in 2002. They placed him on supportive treeatment which, to me, means keep him comfortable until he dies. In the beginning his transfused blood held for 2 weeks and now it only holds for 2 days. He only receives red blood cells and platelets. However, his body build up antibodies against the platelets and now they can't give him platelets anymore. I have a feeling that time is running out faster than the 6 months they mentioned, am I right? Is there anything we can do to make him more comfortable and breathe easier? We don't have a medical aid and they don't do stem cell procedures in South Africa that I know of. Any help or advise would be highly appreciated.
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Old Sun Jan 12, 2014, 05:06 PM
sbk007 sbk007 is offline
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Sorry you have to go through this.
I found this link that might help:
http://www.stemcell.org.za/patients.htm

If The Tx's become more frequent and they can't find platelets its not good.
Are there any specialists?
All the best. Hang in there.
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  #3  
Old Sun Jan 12, 2014, 07:45 PM
bebop bebop is offline
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My Dad built up antibodies too so he had to get matched platelets and blood. They had to order it the day before each transfusion.
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  #4  
Old Fri Jul 11, 2014, 04:57 AM
alyasa alyasa is offline
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SCT in South Africa

Quote:
Originally Posted by NCrous View Post
We don't have a medical aid and they don't do stem cell procedures in South Africa that I know of. Any help or advise would be highly appreciated.
I know that Dr Brittain at Pretoria East Hospital has facilities for transplants. But it is a private facility. www.abj.oncology-sa.co.za
Also, if you can self-fund for 6 months, then joining a medical aid may help because they are obliged to provide Prescribed Minimum Benefits, and can only exclude pre-existing conditions for 6 months. Otherwise go to one of the major tertiary hospitals with a strong academic interest in oncology, like Bara or Joburg Gen.
Hope this helps!
Peace
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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