bethann
Member
My son Nathan had his aortic valve replaced when he was 10. He is now 13. His surgery was an done quickly - within the same day of his being diagnosed with endocarditis - so we did not have time to do much research. I followed the recommendations of the surgeon and a family friend who is a cardiologist. We chose mechanical because, we knew he would likely need at least one and likely more surgeries in his lifetime, and we wanted to limit those. Nathan was involved in the decision, and thinks it was totally his choice (it all happened fast!). He was very sad to give up some sports, but was adamant about reducing his risk of having another surgery soon. I was surprised by his reaction. He has a 21mm st jude valve. The biggest risk for him is that if he grows big like his dad, he may outgrow this valve forcing a redo...
Here is what I will say...
Coumadin terrified me - really. Nathan was until this point healthy (he had a bicuspid valve, but it was had never been diagnosed and he had no noticeable symptoms). He played multiple 'contact' sports. So he had to give up many activities, but 3 years out he has replaced these and is mostly quite happy and active. He plays very competitive tennis and ultimate frisbee (the last one is mildly contact - but were letting it ride for now).
Managing coumadin has been quite easy, once we figured out how to do it. This forum was a huge help to us. We had organized a home test kit before we even left the hospital. The cardiologist requires us to report a test score once a month, but we test weekly. It gives us a sense of trends - before they become problems. He has been on the same dose(s) of coumadin since his 3rd month on it. We find that he needs a slightly higher dose in the summer than the winter - likely due to water flushing through his system and activity level being higher in the summer. We have learned to not be too reactive to slight bumps in his levels, and advocate for him when we think we need a slight adjustment (the summer, winter thing).
Diet has been no big deal. He generally eats a decent amount of vitamin K daily - or over a 2-3 day period, (spinach on his salad at lunch, and a big green vegetable dish at dinner).
Now that we see all the research on TAVI, etc...I wonder if we made the right decision. But I think for an active young boy/man, transcatheter replacements for aortic valves are likely a ways off. So, I think we made the right decision, for him, at the time we had to make it. What else can we ask of ourselves.
I can't imagine stewing with this decision for months or longer. good luck to you.
Bethann
Here is what I will say...
Coumadin terrified me - really. Nathan was until this point healthy (he had a bicuspid valve, but it was had never been diagnosed and he had no noticeable symptoms). He played multiple 'contact' sports. So he had to give up many activities, but 3 years out he has replaced these and is mostly quite happy and active. He plays very competitive tennis and ultimate frisbee (the last one is mildly contact - but were letting it ride for now).
Managing coumadin has been quite easy, once we figured out how to do it. This forum was a huge help to us. We had organized a home test kit before we even left the hospital. The cardiologist requires us to report a test score once a month, but we test weekly. It gives us a sense of trends - before they become problems. He has been on the same dose(s) of coumadin since his 3rd month on it. We find that he needs a slightly higher dose in the summer than the winter - likely due to water flushing through his system and activity level being higher in the summer. We have learned to not be too reactive to slight bumps in his levels, and advocate for him when we think we need a slight adjustment (the summer, winter thing).
Diet has been no big deal. He generally eats a decent amount of vitamin K daily - or over a 2-3 day period, (spinach on his salad at lunch, and a big green vegetable dish at dinner).
Now that we see all the research on TAVI, etc...I wonder if we made the right decision. But I think for an active young boy/man, transcatheter replacements for aortic valves are likely a ways off. So, I think we made the right decision, for him, at the time we had to make it. What else can we ask of ourselves.
I can't imagine stewing with this decision for months or longer. good luck to you.
Bethann
