Ellen Thorp – USA

Ellen Thorp  who lives in Salt Lake City USA began her journey with NTM in 2003
In 2003, her esophagus was damaged during surgery on her spine. This made swallowing difficult. During the next two years Ellen’s weight fell from 70 Kg to 51 Kg. Random breathing difficulties and chest pain began and gradually got worse over time.
By March 2005 she could no longer ignore the increasing difficulties and visited the emergency ward of the hospital. The heart was given the all clear, but she was referred to a Respiratory Physician. A lung function test was conducted and sputum analyzed. Six weeks later she was advised everything was OK. Ellen was still feeling very unwell and insisted the sputum analysis be re-examined. This revealed she was infected with NTM. Treatment was commenced and by July 2007 was completed. 
Ellen never did feel well and was told by all the medical professionals involved that she was imagining it. In the end she grew tired of fighting them . She began to lose weight again. By 2010 her weight had fallen to 57 Kg, was sporadically breathless and was feeling more tired than normal. She asked for another Cat Scan to be done and was told it was unnecessarily. Never the less she insisted  The Cat Scan was performed at the end of 2010 which showed the NTM was still active.
Ellen decided she would now seek the help of the staff at National Jewish Health Hospital (NJH) in Denver (600 Km from her home) , the leading institution for all aspects about NTM.  Ellen spent two weeks at NJH being examined by a multidisciplinary team. In February 2011, it was decided to remove her right middle and lingula lobes of her lung. By May 2012 all the surgery needed had been completed. Treatment was continued and by November an analysis of her sputum was clear and all was well. Ellen had enjoyed a full twelve months with good sputum results. By February 2013, routine sputum analysis showed a return of NTM. Ellen was advised to keep her scheduled check up at NJH in May 2013 which proved the infection had certainly returned and her bronchiectasis worsened. She is still on treatment and will visit NJH again in November 2013.