adnan
Member
Hi,
I have congenital heart disease. A VSD with aortic regurgitation. Apparently, the VSD has damaged the aortic valve to the extent that it needs replacement. I have RCC prolapse which is causing the leaking. I also have ROSV (rupture of Sinus of Valva) which needs to be patched. I am 27 years. And it’s a shame because I have been living a healthy life (relatively) and am quite active. It’s an even bigger shame that I don’t really feel any symptoms and I still have to go through the surgery as the doctors say if I don’t, my heart will get really messed up in about a year.
Doctors recommended a surgery in 1996 when I was 9 years old to fix the VSD and replace my valve. But my parents didn’t go through with it and I am glad they didn’t because I got to live 18 years without taking anti-coagulants. The only downside to this was that I never had any stamina for running. I was able to lift weights, but I could never perform well in sports that require a lot of stamina.
I think in 2007, my aortic regurgitation went from being moderate to mild and it was recommended that I just close the VSD via a catheter. Unfortunately, I didn’t go through with the catheter surgery and now the aortic regurgitation is severe along with ROSV. I think my careless lifestyle (smoking, unhealthy eating habits, not being regular with any physical activities) from 2007 till 2013 had a lot to do with this. So, now I don’t have an option but to do the surgery.
A part of me wants to believe that if I don’t do the surgery, and continue living a healthy lifestyle, my heart will improve on its own and perhaps I can again have an option of fixing the VSD with a catheter. But I have come to the realization that’s just wishful thinking. Correct me if I am wrong here.
After doing a lot of research over here and thinking about what type of life I want to live, I’ve realized I want to go with a tissue valve. My reason being I plan to travel a lot in the upcoming years. I have the financial freedom to be able to travel a lot and I don’t want Warfarin management to be a chore while travelling. If I miss a meal, I’ll have to be worried about my INR levels. I’ll have to be consistent with my diet and that’ll be quite difficult if I am changing cities every few weeks. I also want to the possibility of contact sports (like football, which I could never be good at because of the stamina issue) be open to me.
I started surgeon hunting. The first surgeon I met told me that there is a risk of death of 10-15%. I was quite shocked by it since it wasn’t what I read about open heart surgeries on the net. However, this surgeon was quite open to the possibility of repairing my heart valve. He told me there's a 50/50 chance of him repairing the valve. His attitude was, "let's be optimistic". Even though, most of the cardiologists I've met till now, all of them have said that I’ll definitely have to replace the valve and there is almost no chance of repairing.
The second surgeon I met is probably the most experienced surgeon with congenital heart diseases in India. He has performed over 10,000 surgeries. He told me there is a risk of death of 1%. However, he is almost 100% sure that I’ll have to replace the valve and repairing it is not an option. He says that repairing the valve might work on the table but unless he is absolutely sure that it will work for a long time, he would replace the valve. This surgeon is also quite set in his ways. He is not really into new valves and he wants to use the tried and tested valves. As opposed to the previous surgeon, who told me he will put any valve I like.
Both the surgeons work in the top 2 heart hospitals in India. Although, I have much more confidence in the second surgeon since he seemed confident and has a lot more experience under his belt.
I wanted to ask you guys about this. Should I go for the first surgeon simply because he is optimistic of repairing the valve? If the valve can be repaired, I’ll have the possibility of never having to undergo surgery again. Perhaps I should look into more surgeons? Actually, as I am typing this, I already know the answer to this question.
Also, my surgeon recommended the Carpentier-Edwards PERIMOUNT tissue valve. I read that Medtronics have some very promising tissue valves like the Mosaic, and Hancock II and Freestyle.
Should I try to convince my surgeon to use these valves instead of the old tried and tested Carpentier-Edwards PERIMOUNT? Or should I let him use what he is comfortable using? It’s a tricky question since a better valve could mean almost 5 years more without surgery.
Is there any other new tissue valve in the market that I should look into?
Also, what argument can I make to my surgeon to convince him to use a different tissue valve?
I have congenital heart disease. A VSD with aortic regurgitation. Apparently, the VSD has damaged the aortic valve to the extent that it needs replacement. I have RCC prolapse which is causing the leaking. I also have ROSV (rupture of Sinus of Valva) which needs to be patched. I am 27 years. And it’s a shame because I have been living a healthy life (relatively) and am quite active. It’s an even bigger shame that I don’t really feel any symptoms and I still have to go through the surgery as the doctors say if I don’t, my heart will get really messed up in about a year.
Doctors recommended a surgery in 1996 when I was 9 years old to fix the VSD and replace my valve. But my parents didn’t go through with it and I am glad they didn’t because I got to live 18 years without taking anti-coagulants. The only downside to this was that I never had any stamina for running. I was able to lift weights, but I could never perform well in sports that require a lot of stamina.
I think in 2007, my aortic regurgitation went from being moderate to mild and it was recommended that I just close the VSD via a catheter. Unfortunately, I didn’t go through with the catheter surgery and now the aortic regurgitation is severe along with ROSV. I think my careless lifestyle (smoking, unhealthy eating habits, not being regular with any physical activities) from 2007 till 2013 had a lot to do with this. So, now I don’t have an option but to do the surgery.
A part of me wants to believe that if I don’t do the surgery, and continue living a healthy lifestyle, my heart will improve on its own and perhaps I can again have an option of fixing the VSD with a catheter. But I have come to the realization that’s just wishful thinking. Correct me if I am wrong here.
After doing a lot of research over here and thinking about what type of life I want to live, I’ve realized I want to go with a tissue valve. My reason being I plan to travel a lot in the upcoming years. I have the financial freedom to be able to travel a lot and I don’t want Warfarin management to be a chore while travelling. If I miss a meal, I’ll have to be worried about my INR levels. I’ll have to be consistent with my diet and that’ll be quite difficult if I am changing cities every few weeks. I also want to the possibility of contact sports (like football, which I could never be good at because of the stamina issue) be open to me.
I started surgeon hunting. The first surgeon I met told me that there is a risk of death of 10-15%. I was quite shocked by it since it wasn’t what I read about open heart surgeries on the net. However, this surgeon was quite open to the possibility of repairing my heart valve. He told me there's a 50/50 chance of him repairing the valve. His attitude was, "let's be optimistic". Even though, most of the cardiologists I've met till now, all of them have said that I’ll definitely have to replace the valve and there is almost no chance of repairing.
The second surgeon I met is probably the most experienced surgeon with congenital heart diseases in India. He has performed over 10,000 surgeries. He told me there is a risk of death of 1%. However, he is almost 100% sure that I’ll have to replace the valve and repairing it is not an option. He says that repairing the valve might work on the table but unless he is absolutely sure that it will work for a long time, he would replace the valve. This surgeon is also quite set in his ways. He is not really into new valves and he wants to use the tried and tested valves. As opposed to the previous surgeon, who told me he will put any valve I like.
Both the surgeons work in the top 2 heart hospitals in India. Although, I have much more confidence in the second surgeon since he seemed confident and has a lot more experience under his belt.
I wanted to ask you guys about this. Should I go for the first surgeon simply because he is optimistic of repairing the valve? If the valve can be repaired, I’ll have the possibility of never having to undergo surgery again. Perhaps I should look into more surgeons? Actually, as I am typing this, I already know the answer to this question.
Also, my surgeon recommended the Carpentier-Edwards PERIMOUNT tissue valve. I read that Medtronics have some very promising tissue valves like the Mosaic, and Hancock II and Freestyle.
Should I try to convince my surgeon to use these valves instead of the old tried and tested Carpentier-Edwards PERIMOUNT? Or should I let him use what he is comfortable using? It’s a tricky question since a better valve could mean almost 5 years more without surgery.
Is there any other new tissue valve in the market that I should look into?
Also, what argument can I make to my surgeon to convince him to use a different tissue valve?
