I just wanted to share some good news and how it came about. I was born with VSD and at age 18 it started to cause AI and regurg due to leaflet prolapse. I have been getting along ok, just a little more fatigue in the last several years (I'm 43 now). I was diagnosed with endocarditis in October and this changed everything. Both my cardiologist and the CV surgeon he referred me to recommended surgery to repair the VSD and replace the valve that has calcified over time (apparently the endocarditis caused more calcification as well). They believe without the surgery I will be at higher risk of recurrent endocarditis and more damage to my valve, not to mention the risks of clotting, abscess, and heart failure involved with endocarditis. They want to do the surgery now while I'm in relatively good health.
Anyway, I'm a single guy (divorced) and live in Nashville, but I lived in the Raleigh, NC area for most of my life. My parents and sister still live in that area and will be taking care of me after the surgery. I decided that I wanted to have my surgery at Duke, but ran into gridlock trying to get my doctors here in Nashville to help me find a surgeon at Duke. Thursday I officially had my meltdown and decided I needed to take matters into my own hands. I had researched my options and decided I want the Ross procedure. My surgeon here had also suggested I get a pediatric cardiac surgeon to repair the VSD. One name came up, Dr. James Jaggers. He is the chief of pediatric cardiac surgery at Duke and does the Ross procedure. I sent him and his assistant an e-mail Thursday night outlining my case and asked if he could help me. His assistant alerted him to the e-mail the next morning and he called me shortly after I got to work on Friday. He said he would take my case and I needed to forward him my records and echo tapes (which I took care of Friday). I had concerns about insurance because he isn't in my network, but he said one of his partners is and they would take care of negotiating with my insurance provider.
Even though I don't have a date yet I feel like a huge weight has been lifted from my shoulders. I guess I wanted to share this because there are doctors out there who are willing to help, but sometimes you have to be your own best advocate and do whatever it takes to get the right doctor(s) for your particular situation. This forum has helped me so much in the two weeks or so that I have been here. It has given me the insight and the courage to take the measures necessary to get this process moving (which in turn will preserve my sanity). After talking to Dr. Jaggers for 15 minutes a calm came over me and I know that everything is going to be allright now.
Anyway, I'm a single guy (divorced) and live in Nashville, but I lived in the Raleigh, NC area for most of my life. My parents and sister still live in that area and will be taking care of me after the surgery. I decided that I wanted to have my surgery at Duke, but ran into gridlock trying to get my doctors here in Nashville to help me find a surgeon at Duke. Thursday I officially had my meltdown and decided I needed to take matters into my own hands. I had researched my options and decided I want the Ross procedure. My surgeon here had also suggested I get a pediatric cardiac surgeon to repair the VSD. One name came up, Dr. James Jaggers. He is the chief of pediatric cardiac surgery at Duke and does the Ross procedure. I sent him and his assistant an e-mail Thursday night outlining my case and asked if he could help me. His assistant alerted him to the e-mail the next morning and he called me shortly after I got to work on Friday. He said he would take my case and I needed to forward him my records and echo tapes (which I took care of Friday). I had concerns about insurance because he isn't in my network, but he said one of his partners is and they would take care of negotiating with my insurance provider.
Even though I don't have a date yet I feel like a huge weight has been lifted from my shoulders. I guess I wanted to share this because there are doctors out there who are willing to help, but sometimes you have to be your own best advocate and do whatever it takes to get the right doctor(s) for your particular situation. This forum has helped me so much in the two weeks or so that I have been here. It has given me the insight and the courage to take the measures necessary to get this process moving (which in turn will preserve my sanity). After talking to Dr. Jaggers for 15 minutes a calm came over me and I know that everything is going to be allright now.
