Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Myriam has gone through a battery of tests. The doctors determined that she has a rare decease called Monier-Kuhn which affects the bronchial tubes and lungs. According to them they only have seen two cases a year here, while they see over a 100 bronchciactisis cases. So far there is no cure, we where hoping for better news! All they can do is control it with medications. They put her on another antibiotic and changed one she was taking as it causes her to loose appetite and gave her a metallic taste. Also she has had physical therapy and in respiratory therapy they are teaching her how to use the Acapella, Vest and the nebulizer correctly. Right now they put her on intravenous antibiotics too Also she has to get into a routine in doing her medications. Also the doctors here will be working with the doctors in Ohio and Florida to make sure they follow the instruction for treatment too.We will be leaving Denver on Saturday to return to Ohio. Roland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Hi Roland, Bronchiectasis itself has no ‘cure’ but it isn’t a death sentence.... I haven’t come across the Moniere-Kuhn – I look up my Oxford med handbook... At least identifying what Myriam really has means her treatment and management has a chance to vastly improve. With meds, even IV, it can affect taste – also with strong, frequent & extended use of abx (antibiotics) it is also good to have candida medication prophylactically – I now ALWAYS start on Fungilin as soon as I’m back on abx. Thankyou for keeping us posted, I feel almost some relief she may have better health management now, I really hope so... Pls let her know we are appreciating that you keep us posted, and we’re thinking of her, sending our prayers.... Joy Quote Link to comment Share on other sites More sharing options...
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