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Hi all,
I haven’t posted here for long since my last post in June 2011, 10 months post ATG of my teenage niece, who had been diagnosed moderate AA moving towards SAA. Her conditions deteriorated significantly recently and I really hope to get some advice/sharing from AA patients or their carers. Thanks to this forum. I have learned a lot from you all friendly members who are willing to share their knowledge and experience.
Since receiving ATG in mid 2010, my niece’s blood counts in fact only improved a bit but saved her from red cell transfusion for a year (she did not require platelet transfusion before ATG). 16 months after ATG, her counts could not hold and re-started to have red cell transfusion again every 2- 3 months since early 2012. Her platelets plummeted in Dec 2011 from about 40 to 16-25 and then trending down gradually to 11- 15 in Jan 2013. Doctor then prescribed steroid in mid-Jan 2013. In late Jan 2013, she got high fever, followed by vomiting and bloody diarrhea. Platelets dropped to 6k, needed platelet transfusion for the 1st time. Her hgb then dropped significantly from 9.8 to 7.1 five days later and required transfusion. We later knew that she was diagnosed hypovolemic shock, disseminated intravascular coagulopathy, gastrointestinal bleeding, hyponatraemia, hypokalaemia, but blood and stool culture results were both negative. She stayed in hospital for 10 days and was discharged after antibiotics treatment,. But unfortunately, only after three days, she vomited again with fever and once again, her hgb dropped drastically to 6.4, just a week after the earlier transfusion, and platelets dropped to 5k, and so required red cell and platelet transfusion again.
We worry a lot for the significant drop in hgb and platelets. Doctor said that it is probably due to infection. My niece is receiving antibiotics treatment again in hospital. We worry that she might not be able to recover from this infection. Our doctor mentioned doing bone marrow transplant for her AA. We are scared to death about BMT (my niece has no sibling match) and hope to repeat ATG. However, my niece’s response to the first ATG is disappointing. My niece now resists treatment and was emotionally unstable. My niece’s mother (my sister) already got depressed because of her daughter’s disease. We feel very frustrated and desperate. Would appreciate a lot for any advice/views or sharing!
Leung
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