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Cystic Fibrosis Forum (EXP)

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Non Tuberculosis mycobacteria

donin

New member
Hi - my son has had m. abscessus for 8 years. He has gone on/off intensive (IV) treatment and has had a steady decline in health and functioning and quality of life. He has had some negative smears and even some negative cultures. We are hoping that 6 months of negative smears will be enough for Duke to transplant him. It is 100% in the hands of the ID doc now. In all other regards he's accepted. Waiting is torment, but as long as we're waiting there's hope for a 'yes.'

MomtoprincesswithCF - I share your agony and anguish. I think she needs to meticulously follow the doctor's instructions. If at some point she needs a transplant having been compliant with recommendations will significantly strengthen her eligibility.
 
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