I will read the thread, I think I have read several on here specifically about pericardiectomy, so it's been helpful already.
My daughter had her first attack with pericarditis in the summer of 2009 and it went away after about six days. Of course doctors didn't have a clue what it was. She got it again in November 2009 and it hasn't gone away since then. Of course she has had a few weeks here and there without feeling badly, mostly we count days though. By the time I found a doctor who actually figured it out (I had found pericarditis via a web search of symptoms for chest pain, it sure fit her but I just thought doctors would know that, how I was wrong), she had quite a lot of fluid and was in heart failure. She was referred to a pediatric cardiologist at OU Children's in early 2010 and has had it fairly nonstop, even meds don't keep it away for long. Now she is either getting lots of side effects from the medications she's been on for so long, or her doctor thinks maybe it's a connective tissue disease, but there's no proof, everything shows more or less normal. Her last attack was in February, it was a really bad one and she was in the hospital for 4 days, was feeling better and was discharged and it came back just as bad about a week later. Her cardiologist, the attending cardiologist, and her rheumatologist all recommended at that time that surgery would have to be considered. They all stated that it can be held at bay by medications for as long as I want, but medications are tearing up her stomach and causing other side effects, hair loss, nausea, etc.
We scheduled a meeting with the new surgeon, who had just came here from Mayo Clinic in Rochester. He stated that if what she had was strictly pericarditis, and not related to another disease (who knows?), that he felt very positive that she would do great on the surgery and not have any additional problems and be able to be off medications. I learned fast in the beginning and learned to say no to any steroids as much as possible, so she is not steroid dependent.
Sorry, this is rambling. As of now her cardiologist and rheumatologist and another cardiologist at OU have all recommended surgery in the future. Her adolescent internist doctor, along with a few of the leading researchers in Italy, have recommended not doing a surgery, they are concerned that it will just cause other problems. There is no proof either way on her tests she has had done.
Thank you so much for the sweet words and prayers.
Post Edited (KattOK) : 3/21/2014 9:47:01 AM (GMT-6)