Andrew'sMom
Well-known member
Hi All,
We are back with CCF with the good news we had been hoping for! The doc was very optimistic that Andrew will be able to hold on to his valve for a good 10-15 years (of course they add that little "maybe more, maybe less" blurb in!). Hooray! That is his prediction based on how he has progressed since birth. The dilation of the ascending aorta will continue to be monitored annually. CCF confirmed that his hole (VSD) is still open, and his mitral valve is mildly leaking, but they were not too concerned about it. We talked about a stress test to see how well he tolerates exercise, but the doc says it is best to hold off on those until the kids are older -- stress tests in 5 yr olds generally don't yield good/consistent results. He also suggested we have a work-up done by a pulmonologist to check for exercise-induced asthma, which could be contributing to his getting winded more easily. So hopefully we'll just be here hanging out in the waiting room until he's in the 20-ish yr/early adulthood range, give or take a few! I am anxious to watch what technologies develop over the next 10-15 years ... I am sure the docs will develop better and better ways to treat valve patients. It is still difficult to know that my son faces heart surgery in his future, but I guess I should try not to worry too much over something I can't change... rather I should spend my energy reading and keeping myself informed to make sure he gets the best possible care for the best possible outcome.
By the way, Yes, CCF did do all their own testing there as well as reviewing all his prior records and tapes.
Also, I took my 3 yr old along for a check as well and they told me he has a tri-leaflet bicuspid valve ... two leaflets are fused together at the bottom, but not entirely. SO he will be monitored periodically via echo to see if the leaflets become further fused or any other BAV-associated problems (stenosis or regurg) develop.
We are back with CCF with the good news we had been hoping for! The doc was very optimistic that Andrew will be able to hold on to his valve for a good 10-15 years (of course they add that little "maybe more, maybe less" blurb in!). Hooray! That is his prediction based on how he has progressed since birth. The dilation of the ascending aorta will continue to be monitored annually. CCF confirmed that his hole (VSD) is still open, and his mitral valve is mildly leaking, but they were not too concerned about it. We talked about a stress test to see how well he tolerates exercise, but the doc says it is best to hold off on those until the kids are older -- stress tests in 5 yr olds generally don't yield good/consistent results. He also suggested we have a work-up done by a pulmonologist to check for exercise-induced asthma, which could be contributing to his getting winded more easily. So hopefully we'll just be here hanging out in the waiting room until he's in the 20-ish yr/early adulthood range, give or take a few! I am anxious to watch what technologies develop over the next 10-15 years ... I am sure the docs will develop better and better ways to treat valve patients. It is still difficult to know that my son faces heart surgery in his future, but I guess I should try not to worry too much over something I can't change... rather I should spend my energy reading and keeping myself informed to make sure he gets the best possible care for the best possible outcome.
By the way, Yes, CCF did do all their own testing there as well as reviewing all his prior records and tapes.
Also, I took my 3 yr old along for a check as well and they told me he has a tri-leaflet bicuspid valve ... two leaflets are fused together at the bottom, but not entirely. SO he will be monitored periodically via echo to see if the leaflets become further fused or any other BAV-associated problems (stenosis or regurg) develop.
