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Dec 30, 2017
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In 2001 Mark developed a swelling/growth on the left side of his neck. The local doctors suspected cancer and sent him to specialists in Indianapolis. After seeing five doctors, having four biopsies, numerous blood tests, X-rays, the doctors did not have a diagnosis and determined it was not cancer. Then Mark visited a local dermatologist for some skin lesions on his arms and legs that would not properly heal and was diagnosed as having an auto immune disease called sarcoidosis. According to WebMD “Sarcoidosis is a chronic disease that can affect multiple organs -- eyes, joints, skin -- but lungs are involved in 95% of cases. The disease is characterized by the buildup of immune system cells in organs that form small clusters called granulomas, a type of inflammation of the involved tissues.” Sarcoidosis is not contagious. Mark was treated by drugs that controlled inflammation, and he experienced periods of remission and periodic outbreaks.
In February 2016, Mark was hospitalized at Goshen Hospital with serious heart and lung problems. He was referred to heart and lung specialists in Indianapolis. They discovered significant sarcoidosis damage and scarring to his lungs and some to the heart. He was given many medications and put on continuous oxygen therapy and had many visits to Indianapolis.
After an unexpected five day hospitalization in Indianapolis in late 2016, the doctors started talking about a possible lung transplant. Mark and his parents spent a week in Indianapolis in March where he had a battery of tests to see if he would be eligible for a lung transplant. Then he was given a list of things to do in Goshen to prepare for possible transplant.
Mark moved in with his parents in late summer in anticipation of being put on an organ transplant list sometime this fall or winter. In September the transplant team in Indianapolis said they would not do a lung transplant and referred Mark to the Cleveland Clinic for a possible heart and lung transplant. He has not gotten to Cleveland Clinic due to a number of roadblocks with insurance and getting needed dental work completed. At his last appointment in Indianapolis in November the doctors have put him on Palliative Care due to his heart getting weaker.
Just before Christmas, Mark and his parents met with a representative from the Center for Hospice Care. The representative said Mark qualifies for Hospice Care as well as Home Health Care. Mark chose Home Health Care, which will provide weekly visits from nurses who will monitor Mark’s health and help him maintain his health.