Mended Hearts Open Forum

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

I had severe regurgitation when I was 62 and had my mitral valve repaired several months later at 63.  I was in heart failure due to the severe regurgitation.  That was 11-years ago and I've been doing just fine and still am very active with exercise as I've been all of my life.

You very likely have myxomatous degeneration of your leaflet with prolapse but you should ask your cardiologist to confirm this diagnosis.  It should also indicate your diagnosis on the cardiologist notes from you initial consult assuming you had an echo that is; if not, then your cardiologist probably thinks your situation is very minimal which would be nice.  These valves are nearly always repairable provided you go to a center that does a lot of these.  There are places in all major cities that do a lot of these and you should do your homework in advance of needed surgery.  I see no real reason to rush to surgery if your cardiologist advises that you can wait while being monitored.  Assuming you have myxomatous prolapse (very likely) your situation is quite common.  About 1% of the population have this condition but only one in ten of those folks will ever need the surgery.  It would not be beneficial to rush to surgery if you don't need it especially considering you may never need it.  Again, in the meantime before you need the surgery that you may never need, I suggest you find those center known for doing a lot of MVR (mitral valve repair) and find a surgeon there you like or at least identify the place and some good surgeons.  If you end up in the hands of some surgeon who does MVR but does all kinds of other cardio surgery also, then you may end up with a replacement valve which would be a real shame because outcome are not as good in that case.  A well repaired valve is usually a lifetime solution.  Mine was done robotically assisted which is a lot more common and improved now, than when I had mine done in 2013.  No broken bones, no sternotomy, very little pain, and quick recovery.  Don't panic and good luck!

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

I had severe regurgitation when I was 62 and had my mitral valve repaired several months later at 63.  I was in heart failure due to the severe regurgitation.  That was 11-years ago and I've been doing just fine and still am very active with exercise as I've been all of my life.

You very likely have myxomatous degeneration of your leaflet with prolapse but you should ask your cardiologist to confirm this diagnosis.  It should also indicate your diagnosis on the cardiologist notes from you initial consult assuming you had an echo that is; if not, then your cardiologist probably thinks your situation is very minimal which would be nice.  These valves are nearly always repairable provided you go to a center that does a lot of these.  There are places in all major cities that do a lot of these and you should do your homework in advance of needed surgery.  I see no real reason to rush to surgery if your cardiologist advises that you can wait while being monitored.  Assuming you have myxomatous prolapse (very likely) your situation is quite common.  About 1% of the population have this condition but only one in ten of those folks will ever need the surgery.  It would not be beneficial to rush to surgery if you don't need it especially considering you may never need it.  Again, in the meantime before you need the surgery that you may never need, I suggest you find those center known for doing a lot of MVR (mitral valve repair) and find a surgeon there you like or at least identify the place and some good surgeons.  If you end up in the hands of some surgeon who does MVR but does all kinds of other cardio surgery also, then you may end up with a replacement valve which would be a real shame because outcome are not as good in that case.  A well repaired valve is usually a lifetime solution.  Mine was done robotically assisted which is a lot more common and improved now, than when I had mine done in 2013.  No broken bones, no sternotomy, very little pain, and quick recovery.  Don't panic and good luck!

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

I had my MVR at Cleveland clinic.  Mayo and others do these as well.  it doesn't need to be robotic but there are some nice advantages since its less invasive.  Robotic is more commonly done now than when I had mine done.  In general, you will want to go to a referral center for this, because those are the only places that have enough volume such that they can afford to have people that specialize in MVR and do lots of them.  This is probably even more true if you do it robotically because it takes even longer to get good at the robot.  Most community hospitals don't have that volume, so their surgeons must do lots of different procedures and they never get good enough at MVR.  Those folks just replace the valve unless its a simple repair.  Those folks will often tell you "your valve wasn't repairable so I replaced it."  What that really means is:  "I didn't know how to repair it, so I replaced it."  Any good surgeon who specializes in MVR such as you find at referral centers can repair nearly any leaky valve due to myxomatous degeneration which is by far the most common reason for mitral leakage.  Other reasons include chemotherapy, bacterial endocarditis, rheumatic fever and a few others.  Those valves may need to be replaced. 

I hope this information is helpful.

Ed  

I had severe regurgitation when I was 62 and had my mitral valve repaired several months later at 63.  I was in heart failure due to the severe regurgitation.  That was 11-years ago and I've been doing just fine and still am very active with exercise as I've been all of my life.

You very likely have myxomatous degeneration of your leaflet with prolapse but you should ask your cardiologist to confirm this diagnosis.  It should also indicate your diagnosis on the cardiologist notes from you initial consult assuming you had an echo that is; if not, then your cardiologist probably thinks your situation is very minimal which would be nice.  These valves are nearly always repairable provided you go to a center that does a lot of these.  There are places in all major cities that do a lot of these and you should do your homework in advance of needed surgery.  I see no real reason to rush to surgery if your cardiologist advises that you can wait while being monitored.  Assuming you have myxomatous prolapse (very likely) your situation is quite common.  About 1% of the population have this condition but only one in ten of those folks will ever need the surgery.  It would not be beneficial to rush to surgery if you don't need it especially considering you may never need it.  Again, in the meantime before you need the surgery that you may never need, I suggest you find those center known for doing a lot of MVR (mitral valve repair) and find a surgeon there you like or at least identify the place and some good surgeons.  If you end up in the hands of some surgeon who does MVR but does all kinds of other cardio surgery also, then you may end up with a replacement valve which would be a real shame because outcome are not as good in that case.  A well repaired valve is usually a lifetime solution.  Mine was done robotically assisted which is a lot more common and improved now, than when I had mine done in 2013.  No broken bones, no sternotomy, very little pain, and quick recovery.  Don't panic and good luck!

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------

I had my MVR at Cleveland clinic.  Mayo and others do these as well.  it doesn't need to be robotic but there are some nice advantages since its less invasive.  Robotic is more commonly done now than when I had mine done.  In general, you will want to go to a referral center for this, because those are the only places that have enough volume such that they can afford to have people that specialize in MVR and do lots of them.  This is probably even more true if you do it robotically because it takes even longer to get good at the robot.  Most community hospitals don't have that volume, so their surgeons must do lots of different procedures and they never get good enough at MVR.  Those folks just replace the valve unless its a simple repair.  Those folks will often tell you "your valve wasn't repairable so I replaced it."  What that really means is:  "I didn't know how to repair it, so I replaced it."  Any good surgeon who specializes in MVR such as you find at referral centers can repair nearly any leaky valve due to myxomatous degeneration which is by far the most common reason for mitral leakage.  Other reasons include chemotherapy, bacterial endocarditis, rheumatic fever and a few others.  Those valves may need to be replaced. 

I hope this information is helpful.

Ed  

I had severe regurgitation when I was 62 and had my mitral valve repaired several months later at 63.  I was in heart failure due to the severe regurgitation.  That was 11-years ago and I've been doing just fine and still am very active with exercise as I've been all of my life.

You very likely have myxomatous degeneration of your leaflet with prolapse but you should ask your cardiologist to confirm this diagnosis.  It should also indicate your diagnosis on the cardiologist notes from you initial consult assuming you had an echo that is; if not, then your cardiologist probably thinks your situation is very minimal which would be nice.  These valves are nearly always repairable provided you go to a center that does a lot of these.  There are places in all major cities that do a lot of these and you should do your homework in advance of needed surgery.  I see no real reason to rush to surgery if your cardiologist advises that you can wait while being monitored.  Assuming you have myxomatous prolapse (very likely) your situation is quite common.  About 1% of the population have this condition but only one in ten of those folks will ever need the surgery.  It would not be beneficial to rush to surgery if you don't need it especially considering you may never need it.  Again, in the meantime before you need the surgery that you may never need, I suggest you find those center known for doing a lot of MVR (mitral valve repair) and find a surgeon there you like or at least identify the place and some good surgeons.  If you end up in the hands of some surgeon who does MVR but does all kinds of other cardio surgery also, then you may end up with a replacement valve which would be a real shame because outcome are not as good in that case.  A well repaired valve is usually a lifetime solution.  Mine was done robotically assisted which is a lot more common and improved now, than when I had mine done in 2013.  No broken bones, no sternotomy, very little pain, and quick recovery.  Don't panic and good luck!

Hi everyone,  I am glad to have come across this organization as I am in need of support. I am 64 years old, exercise regularly, and in very good health other than my heart problem.  I found out at a routine physical in May of 2023 that I had a "heart murmur."   I asked to be referred to a cardiologist who confirmed that I have MVR (asymptomatic).  The doctor suggested that I do annual follow ups to watch and see if my condition worsens.  I was not able to "hurry up and wait" and I have reached out to some cardiac experts in the Boston area.  I am one who would be very uncomfortable waiting for symptoms to appear and then try to find a specialist for my options.  Instead I am in the process of seeking out medical/surgical opinions about my options/timing for any operation I may need.  My cardiologist has said I will very likely need a replacement, not repair.   

As I said, I am seeking support both from others who have gone through mitral valve replacement and have had a positive outcome and for emotional support for the anxiety, fear and worry that I am experiencing.  I truly appreciate connecting with others, it will help me immensely.

Thanks

Laurie 

------------------------------
Laurie Hall
Hampton NH
------------------------------