I am trying to get some information on post Fontan surgery. My son was born on 1993 with congenital heart disease. After consultation with doctors, he had been diagnosed as:
1. Atrial isomerism/Single Ventricle.
2. s/p BT shunt and Glenn.
3. Situs Inversus.
After two procedures, Fontan was done on 24 July 2007 at New York Presbyterian Hospital. He was doing well until now. He finished his high school in 2011 and now studying Film at Full sail University, Florida. Beginning of this month FEB, he started to feel some unusual pressure on his heart. He describes his symptoms as “I feel some pressure, usually after walking or even after light physical activity, and feel like overflow of blood towards my head and I feel very unpleasant. This feeling lasts for 5-10 minutes. When I feel increased pressure, it looks like my heart is stopped for a second, may be skip beat and starts again. I am feeling those symptoms mostly in the evening time. There is no problem in eating and sleeping. I am afraid of being active”.
He went to emergency room in Florida Hospital at winter park, Orlando. We rushed from New York to Florida. He was later moved to ward and kept for 2 days. During his stay in the Hospital, the tests ecocardiogram, MRI and consultation with cardiologist and Hematologist was done. Surprisingly, he did not feel any such symptoms during his three days stay in hospital. He had been monitored by Holter throughout his stay. They said, there is nothing wrong in his report. I personally discussed with cardiologist and hematologist. They said, everything is normal. He discharged from the hospital on Friday Feb 10. When we came back home in Orlando, he felt again same problem. But this time frequency was less than before. We travelled back to New York with my son on Sunday by train to take opinion from his physicial. We met his physician on Monday. He again tested with ecocardiogram and monitored by Holter. His physician said, there is no problem in ecocardiogram and Holter. At this time, when he was monitored by Holter, he felt same problem. I was thinking that some record could be found in Holter. After examining the holter report, doctor confirmed that there is no problem. My son still having same problem but nothing is diagnosed. I am not sure what to do and where to go. Is this life threatening symptom? I would appreciate suggestions. Thanks