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Monday, May 2, 2016
Clarification to Expert’s Question re:Disease
My original question: Patient Dying From Disease
Patient in hospital 3 months put on feeding tube which caused problems with leaking and constant infections. Took out tube, now stomach has a hole in it which will not heal. Patient is deciding to go to hospice and die. Can anything be done to heal the stomach? Patient is 70 yrs old and was in very good health before diagnosed 3 yrs. ago. Doctors started her on chemo but only got in 2 treatments so far.
Please give advice before it is too late. Thank you.The physician giving an answer to my question asked for clarification re: disease. Will you be able to contact him with my reply. Disease is sarcoidosis. Patient`s feeding tube wound is starting to heal and doctors have inserted a feeding tube again. But she suffers from constant infections and fever. I have found out from another website that there is a specialist is sarcoidosis at the Univ. of Wisconsin Madison. At this time, her doctors are just waiting for her to heal before continuing treatment for the disease. They were trying chemo. But friends wonder if the family should seek out this specialist doctor now to help treat her condition with the feeding tube issue. She has been moved from the hospital to a LifeCare facility. She was in the hospital 4 months. She went into emergency due to blood clots, then doctors found a perforated colon. It was after the operation to repair this that she was placed on feeding tube because she could not eat due to her sarcoidosis. She was on Prednisone for a year which helped but doctors were trying to wean her off of this. That`s when the flare up became overwhelming and all these other issues occurred. Husband and patient have given me permission to do this research. But I fear they are too complacent thinking the current doctors know all the answers when they are not specialists in this disease. We just want to be assured they are handling these issues taking into consideration the problems caused by the disease. Would a sarcoidosis specialist have better ideas on how to deal with patient`s current issues? In my research, I`ve discovered that most people with this disease are Afro-American females, age 20-40 and that it can leave as fast as it came on, usually in 5-6 years. Is this true? Can her disease go away eventually? She was ready to give up on life a month ago, but now there seems to be a small hint of hope. I say small, because she still suffers much from infections. Please help in any way you can. Thank you.
In a complex case like this, it is not appropriate for me to attempt to provide supervision of medical care. It sounds like severe infections, not sarcoidosis, are the most life-threatening issues at this time.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University