Karen
Well-known member
Well, I don't know if anyone would be interested, but I thought I'd share what my new cardiologist (director of the Adult Congenital Heart Disease clinic here in the region) had to say about "stuff."
It's very interesting that there are about as many opinions as there are patients and cardiologists about some of the questions that come up time and again. This one differed on many points from my previous cardiologist.
He would recommend a mechanical valve for someone my age or even quite a bit older. (My other doctor strongly favors the Ross procedure). He feels coumadin use is usually easily managed - "especially with the availability of home testing machines" that allow patients to do the testing for themselves.
Procedures that become more complicated by the fact that a patient is on coumadin are also not a worry for him. He has a "pharmaceutical team" that works through those situations with minimal fuss.
He does not share the optimism of my 1st cardiologist that percutaneous valve replacements are going to happen "soon." Especially for aortic valves. He says there's greatest hope for pulmonic valves replaced in this way, but there are issues even with those that need to be worked out.
But the reason that I was referred to him by my primary cardiologist was because of the questions I had regarding aorta imaging. He is very proactive in this area. He told me of lecturing to his "fellows" at the University of Utah Medical School about the association of aneurysms and bicuspid valves. Only a week later, one of those "fellows" was able to determine that a patient - a physican with a bicuspid valve who was from out of state, but in Utah, skiing - was experiencing a dissection. Others in the emergency room had not been looking for that. He said that monitoring the aortic root is critical for all bicuspid valve patients. But he said coarctation patients also need to have the whole aortic arch closely monitored.
So I have an appointment for a baseline cardiac MR to be done next week. Then it's off to HIS clinic every year for my annual echos.
One other note that might be of interest to some of you. I have mentioned here my concern about my son's heart murmur at the age of 5. This doctor feels that a cardiologist should be able to detect an innocent "flow" murmur in a child without additional tests. Murmurs are very common in CHILDREN. He doesn't think this son is any more likely to have a bicuspid valve than any of my other children. And he doesn't feel it necessary to have them screened without SOME symptom of some kind...
However, murmurs are NOT normal in adults. I have a brother 5 years older than me who has a murmur that has never been evaluated. His internist told him it's nothing to worry about. My new doc believes that although a cardiologist may be able to determine whether or not a murmur is signficant without additional studies, he doesn't think an internist would. He recommended that my brother at least have an echocardiogram, if not being seen by a cardiologist.
So the valve choice is something to be put on the shelf for a while. It will be interesting to see which arguments prevail if and when that time ever comes for me. In the meantime, I will be glad for the peace of mind regarding the aorta imaging and having a cardiologist very tuned in to bicuspid/coarctation issues.
'Hope that some of this is helpful to someone else out there!
Karen
It's very interesting that there are about as many opinions as there are patients and cardiologists about some of the questions that come up time and again. This one differed on many points from my previous cardiologist.
He would recommend a mechanical valve for someone my age or even quite a bit older. (My other doctor strongly favors the Ross procedure). He feels coumadin use is usually easily managed - "especially with the availability of home testing machines" that allow patients to do the testing for themselves.
Procedures that become more complicated by the fact that a patient is on coumadin are also not a worry for him. He has a "pharmaceutical team" that works through those situations with minimal fuss. He does not share the optimism of my 1st cardiologist that percutaneous valve replacements are going to happen "soon." Especially for aortic valves. He says there's greatest hope for pulmonic valves replaced in this way, but there are issues even with those that need to be worked out.
But the reason that I was referred to him by my primary cardiologist was because of the questions I had regarding aorta imaging. He is very proactive in this area. He told me of lecturing to his "fellows" at the University of Utah Medical School about the association of aneurysms and bicuspid valves. Only a week later, one of those "fellows" was able to determine that a patient - a physican with a bicuspid valve who was from out of state, but in Utah, skiing - was experiencing a dissection. Others in the emergency room had not been looking for that. He said that monitoring the aortic root is critical for all bicuspid valve patients. But he said coarctation patients also need to have the whole aortic arch closely monitored.
So I have an appointment for a baseline cardiac MR to be done next week. Then it's off to HIS clinic every year for my annual echos.
One other note that might be of interest to some of you. I have mentioned here my concern about my son's heart murmur at the age of 5. This doctor feels that a cardiologist should be able to detect an innocent "flow" murmur in a child without additional tests. Murmurs are very common in CHILDREN. He doesn't think this son is any more likely to have a bicuspid valve than any of my other children. And he doesn't feel it necessary to have them screened without SOME symptom of some kind...
However, murmurs are NOT normal in adults. I have a brother 5 years older than me who has a murmur that has never been evaluated. His internist told him it's nothing to worry about. My new doc believes that although a cardiologist may be able to determine whether or not a murmur is signficant without additional studies, he doesn't think an internist would. He recommended that my brother at least have an echocardiogram, if not being seen by a cardiologist.
So the valve choice is something to be put on the shelf for a while. It will be interesting to see which arguments prevail if and when that time ever comes for me. In the meantime, I will be glad for the peace of mind regarding the aorta imaging and having a cardiologist very tuned in to bicuspid/coarctation issues.
'Hope that some of this is helpful to someone else out there!
Karen
