Background: I am a 41 yr old with tetralogy of fallot. 3rd surgery 1990 for a cadavar pulmonary valve.
Facts:
1)The best cardio in my state for adult congenital patients is a peds cardio.
2)When I saw him 1 1/2 yrs ago I asked him how many adult pts he saw. His response was "enough". I said I know, but how many. He figured about 300 pt visits per year.
3)Last year when I asked him if the hospital had a surgeon that could do my surgery his response was "you do not have to worry about that, the surgery is not that technically difficult".
4)When I asked him when he would know when it was time for my next surgery he was very vague and said the most important part is the size of the right ventricle. When the right ventricle is 2x the size of the left. He did not mention any other factors except exercise intolerance. He wanted to "procrastinate as long as possible". He ordered an MRI. The MRI report did not mention my pulmonary or tricuspid valve at all.
5)Right ventricle is dilated and dysfunctional with decreased EF. Left ventricle mildly dysfunctional with decreased EF. Right ventricle 1.8x size of left.
I decided that I was not comfortable with his responses. I went to the adult congenital clinic at Boston children's last month for an evaluation. I learned that 85% if the blood is going to the right lung and only 15% is going to the left lung. According to their MRI my pulmonary regurg is 30% and my tricuspid regurg is 20%. GXT showed VO2 of 17.9ml/kg and that I am unable to increase my stroke volume appropriately with exercise. The Boston cardio suggested use of a Beta-blocker at some point because of the left ventricle dysfunction.
When I came back I called the thoracic surgeon's offices at my cardio's hospital. Surgeon #1 only does children. Surgeon #2 has only done 7-10 in the past year. I had rulled out surgeon #3 a long time ago. I called the surgeon's office in Boston and he does about 25/hr.
Because of the new information that I was unaware of I requested that she speak with my local cardio and send the records to him. She did both. In her letter she wrote "The question of timing of subsequent pulmonary valve replacement is difficult, as she does meet several parameters at this time." When I asked her when I might need PVR done, she just said it depends on the changes over time.
I called my local cardio today because they had now both talked about using beta blockers at some point. I told the nurse that I dreaded going on beta blockers and that if the cardio wanted me to go on beta blockers that I just as well get a appointment scheduled and get started so that I did not have to wait and worry. They reply was that he did talk to the Boston cardio that he had not learned anything new and that nothing was urgent and that he did not want to see me until October.
I am frustrated because I am afraid that the Boston cardio will play a subordinate role to my local cardio even when she might be the one that needs to call the shots and that my local cardio is not going to listen to a word from Boston.
Debbie
Facts:
1)The best cardio in my state for adult congenital patients is a peds cardio.
2)When I saw him 1 1/2 yrs ago I asked him how many adult pts he saw. His response was "enough". I said I know, but how many. He figured about 300 pt visits per year.
3)Last year when I asked him if the hospital had a surgeon that could do my surgery his response was "you do not have to worry about that, the surgery is not that technically difficult".
4)When I asked him when he would know when it was time for my next surgery he was very vague and said the most important part is the size of the right ventricle. When the right ventricle is 2x the size of the left. He did not mention any other factors except exercise intolerance. He wanted to "procrastinate as long as possible". He ordered an MRI. The MRI report did not mention my pulmonary or tricuspid valve at all.
5)Right ventricle is dilated and dysfunctional with decreased EF. Left ventricle mildly dysfunctional with decreased EF. Right ventricle 1.8x size of left.
I decided that I was not comfortable with his responses. I went to the adult congenital clinic at Boston children's last month for an evaluation. I learned that 85% if the blood is going to the right lung and only 15% is going to the left lung. According to their MRI my pulmonary regurg is 30% and my tricuspid regurg is 20%. GXT showed VO2 of 17.9ml/kg and that I am unable to increase my stroke volume appropriately with exercise. The Boston cardio suggested use of a Beta-blocker at some point because of the left ventricle dysfunction.
When I came back I called the thoracic surgeon's offices at my cardio's hospital. Surgeon #1 only does children. Surgeon #2 has only done 7-10 in the past year. I had rulled out surgeon #3 a long time ago. I called the surgeon's office in Boston and he does about 25/hr.
Because of the new information that I was unaware of I requested that she speak with my local cardio and send the records to him. She did both. In her letter she wrote "The question of timing of subsequent pulmonary valve replacement is difficult, as she does meet several parameters at this time." When I asked her when I might need PVR done, she just said it depends on the changes over time.
I called my local cardio today because they had now both talked about using beta blockers at some point. I told the nurse that I dreaded going on beta blockers and that if the cardio wanted me to go on beta blockers that I just as well get a appointment scheduled and get started so that I did not have to wait and worry. They reply was that he did talk to the Boston cardio that he had not learned anything new and that nothing was urgent and that he did not want to see me until October.
I am frustrated because I am afraid that the Boston cardio will play a subordinate role to my local cardio even when she might be the one that needs to call the shots and that my local cardio is not going to listen to a word from Boston.
Debbie
