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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: 10 hours ago | Replies (9354)Comment receiving replies
My husband of 62 years was recently diagnosed. On top of MAC he has Marfan Syndrome. He has had two heart valve transplants, several strokes, bullectomy surgery and a pleurodesis in one lung. He is 6'-5" and weighs 148 pounds. We meet with infectious diseases at Baylor Scott & White in Temple, TX this week. They will be testing his sputum for drug resistance prior to treatment. He was given 5-7 years with the last heart valve replacement which was 3 years ago. He has to be incredibly careful with medication because of potential affects to his liver. Our concerns are many. The length of treatment and side effects taking a toll on a person that does not have "reserves". Would appreciate feed back. Thank you
Replies to "My husband of 62 years was recently diagnosed. On top of MAC he has Marfan Syndrome...."
Good day Chaac2272, Where is your Husband being treated? My sputum was tested for drug resistance back in April 2015... and the results were 'inconclusive'. There are several strands of MAC and therefore most doctors lump them under the category of MAI, and sometimes erroneously conversely. Has your Husband been tested for Alpha-1 antitrypsin deficiency? THis is an autoimmune disease that would explain why his Liver and his Lungs are being attacked and why his immune system is weakened, and unable to fight off the mycobacterium. If not, Start there. Ask your doctors to perform this genetic test.
Best wishes,
Melissa
Onlywalther....go to ntminfo.org to check their list of Physicians who know MAC....by stae...I think there is acenter in Tyler texas.tdrell
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I would hesitate to give much “feedback” because your husband’s health is complex and so treating MAC will necessarily be the purview of the doctor who will have to decide if his liver can withstand the drugs that are needed to treat the MAC. They do check for liver enzymes when a person is on drugs that are generally used with this diagnosis. It is so difficult when at an older age one gets multiple diagnoses and treating everything is difficult. I wish you the best. <br />
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