Hello everybody,
I figured I would share my story. I have been reading this forum for years off and on.
I am now 3 months post my 2nd AVR.
I had the first one at 33 in 2014. At the time I was choosing between Ross, tissue and mechanical. Ross went out the window since one of the best (in terms of peer-reviewed outcomes data) told me that this option wasnt for me because my aortic root was already too dilated. He said it would fail early, so it shouldnt be offered. I was really scared of warfarin (probably unncessarily so), so settled on an equine stentless valve. I was told equine pericardium calcifies less. The surgeon said that the next one could be a TAVI at the time. But when it came to it, my stentless valve failed, but in a manner that made TAVI impossible. Essentially, the valve didnt calcify (as promised), but instead one of the leaflets tore away (a bit like an old leather wallet can tear). But because there was no calcium, TAVI was impossible. So I needed to get a 2nd AVR.
My first surgery was in the US. Now I am in the UK. The medical advice in the UK was different from the US. My cardiologist, who is the number one proponent of TAVI in the UK, told me that a mechanical valve would be what he would choose at my age. He said that he did Tavi-in-Tavi-in-Tavi before successfully, but that this isnt a solution for someone in their 40s because a surgical intervention was inevitable in any case. My cardiologist said that monitoring warfarin with the Roche device is a minor inconvenience and that self-management improves outcomes a lot. He then referred me to a surgeon who specialised in reoperations (60% of my surgeons operations are reoperations). My surgeon said that he operated on people for their 6th AVR before without problems. However, he also said that my only option was a mechanical valve, because sometimes things happen (what if there are other heart issues down the line), and my lifestyle wasnt anything were warfarin would be an issue. He said I could still go skiing, so long this is done defensively and I wore a helmet. Despite his experience with complex multiple AVR cases, he told me it is better to avoid multiple reoperations if you can.
I found the clear recommendations of the doctors in the UK (I.e. not putting all of the decision making on the patient) very helpful. Importantly, I knew my cardio to be the one of the best in the UK and my surgeon had really good operative outcomes (his mortality rate for emergency aneurysm surgery was five times lower than national average). By giving really clear recommendations, they made my decision about what to do a lot easier. So I ended up with an On-X valve and am happy about it. So the best advice I can to anyone looking for an AVR: Find a set of excellent doctors and trust their advice. They know this way better than you (the patient) ever will.
I figured I would share my story, so hopefully others dont make the same valve choice mistakes in the future.
I figured I would share my story. I have been reading this forum for years off and on.
I am now 3 months post my 2nd AVR.
I had the first one at 33 in 2014. At the time I was choosing between Ross, tissue and mechanical. Ross went out the window since one of the best (in terms of peer-reviewed outcomes data) told me that this option wasnt for me because my aortic root was already too dilated. He said it would fail early, so it shouldnt be offered. I was really scared of warfarin (probably unncessarily so), so settled on an equine stentless valve. I was told equine pericardium calcifies less. The surgeon said that the next one could be a TAVI at the time. But when it came to it, my stentless valve failed, but in a manner that made TAVI impossible. Essentially, the valve didnt calcify (as promised), but instead one of the leaflets tore away (a bit like an old leather wallet can tear). But because there was no calcium, TAVI was impossible. So I needed to get a 2nd AVR.
My first surgery was in the US. Now I am in the UK. The medical advice in the UK was different from the US. My cardiologist, who is the number one proponent of TAVI in the UK, told me that a mechanical valve would be what he would choose at my age. He said that he did Tavi-in-Tavi-in-Tavi before successfully, but that this isnt a solution for someone in their 40s because a surgical intervention was inevitable in any case. My cardiologist said that monitoring warfarin with the Roche device is a minor inconvenience and that self-management improves outcomes a lot. He then referred me to a surgeon who specialised in reoperations (60% of my surgeons operations are reoperations). My surgeon said that he operated on people for their 6th AVR before without problems. However, he also said that my only option was a mechanical valve, because sometimes things happen (what if there are other heart issues down the line), and my lifestyle wasnt anything were warfarin would be an issue. He said I could still go skiing, so long this is done defensively and I wore a helmet. Despite his experience with complex multiple AVR cases, he told me it is better to avoid multiple reoperations if you can.
I found the clear recommendations of the doctors in the UK (I.e. not putting all of the decision making on the patient) very helpful. Importantly, I knew my cardio to be the one of the best in the UK and my surgeon had really good operative outcomes (his mortality rate for emergency aneurysm surgery was five times lower than national average). By giving really clear recommendations, they made my decision about what to do a lot easier. So I ended up with an On-X valve and am happy about it. So the best advice I can to anyone looking for an AVR: Find a set of excellent doctors and trust their advice. They know this way better than you (the patient) ever will.
I figured I would share my story, so hopefully others dont make the same valve choice mistakes in the future.
