My 23 year-old son, William, has been suffering from pericarditis for six years. He has been treated by many medications - but only large doses of prednisone have been able to keep the discomfort at bay. Even then, dropping below 20mg causes a relapse and the side effects have been devastating to him. The only other medication that has shown any promise at all is imuran and this has only shown marginal benefit.
He is at the end of his rope and would rather not live than to continue. He has been tested for many things but no cause has been found.
Given his level of desperation, we are considering encouring him to undergo pericardiectomy. We would greatly appreciate any feedback or advice. In particular, if you have had a similar experience and worked with a doctor that seemed to have solid knowledge of pericardial disease and would be willing to share that contact information, I would be very grateful.
We would be willing to take him anywhere in the U.S. for treatment, though we reside in Pa.
AmyDB