My husband (59) has a bicuspid valve and aortic stenosis. It is genetic as several of his siblings have bicuspid valves, including some with aneurysms. He ...Read more
My husband (59) has a bicuspid valve and aortic stenosis. It is genetic as several of his siblings have bicuspid valves, including some with aneurysms. He has been seen by a cardiologist over the past few years. Each year the stenosis "worsens" and valve gets tighter but he has been told that since he doesn't have symptoms, no surgery is warranted at the time. The thing is, I think he is denying symptoms. I notice him short of breath many times and he sleeps constantly. Do you think I should contact the doctor's office prior to his next visit and convey my worries? Or will I just look like an worrywart and should be leaving it all in the hands of the professionals?
Anna Jones Kathy, if you are worried, you should speak with his doctor. I am always providing my husband's doct ... Read more
Anna Jones Kathy, if you are worried, you should speak with his doctor. I am always providing my husband's doctors with his symptoms and what I am seeing. That is being a good advocate for your husband and is a help to his doctors in determining his treatment.
I had the exact same thing. It was misdiagnosed for quite awhile with a prolapsed mitral valve. My youngest brother also has a bicuspid AV. Only 1.5 - 2% of the population have BAV, but once found in the family, the stats jump to 25%. You need to insist that your husband's siblings and children get an echo. It has a genetic component but does not discriminate male versus female.
I would advise you to ask about the peak differential pressure readings. This is a measurement they do during the echocardiogram.
Anything over 40 "/hg is "severe" an needs to be scheduled for surgery. Two things to keep in mind: 1.) between the time that a decision is made to have surgery and the actual surgery date can be months. The last thing you want to have happen is to have emergency surgery by an unknown cardiac surgeon in a local hospital. Experience matters. and 2.) the stenosis accelerates at an astonishing rate. The tighter the valve, the more turbulent the blood flow. With this turbulent flow, the calcium in the blood has a better chance to plate out onto the valve.
In my case, I was clicking along for years at mid 20's "/hg. Last August, it jumped to 50. Two months later, I was at 70"/hg and by the time I got into surgery, the valve opening was down to a pencil point. Also, because the heart is working extra hard to push blood, the heart expands.
If his cardiologist doesn't want to give you the readings, seek out a second opinion.
I had my surgery 12/12/17 and although I'm trying to build my stamina, the way my heart feels and my ability to walk without fatigue is dramatic.
Your husband may not understand what he is supposed to feel like, therefore he may be under reporting his symptoms. Make sure he understands that being "tough" and man-like may land him in big trouble. You need to be your own health advocate. If you simply leave it in the hands of your doctor, you are gambling with your life.
Good luck to you and may God bless. I'll pray that you get the help you and your husband need.
I was the same way--slept all the time and no energy, but really didn't recognize this as symptoms. I ... Read more
I was the same way--slept all the time and no energy, but really didn't recognize this as symptoms. In October of this year I had TAVR to replace my aortic valve at 59. I too had a BICUSPID valve. I had so much more energy after. My cardiologist watched the mean pressure numbers in my heart. When they began to rise he recommended surgery as my left ventricle had begun to slightly enlarge from working so hard. You are his best advocate.
Michelle E Kathy I have severe stenosis with only mild symptoms. My cardiologist took a conservative approach, a ... Read more
Michelle E Kathy I have severe stenosis with only mild symptoms. My cardiologist took a conservative approach, as I am still doing well in all my activities. But I chose to consult with one of the surgeons; much to my relief he said I met the criteria for surgery. In his words "You can wait but there is no good reason to. It's only going to get worse." I am now taking the steps for surgery scheduled in Feb. If your husband is short of breath and sleeping all the time, a second opinion is definitely in order. Besides as you mentioned he may be denying his symptoms. Good luck and God bless!
Gerald Poulton Hi Kathy, My aortic valve reached the critical stage and I still didnt have symptoms. The decision is ... Read more
Gerald Poulton Hi Kathy, My aortic valve reached the critical stage and I still didnt have symptoms. The decision isnt only made if you have or dont have symptoms, when my valve reached a certain stage they started the process of booking the surgery and I am sure they will do the same with him. I am not sure about your relationship with your husband but I would suggest you talk to your husband about this and not just talk to his doctor without him knowing. I know that is what I would want my wife to do.
Goodluck
John Dodson Hi Kathy, you should be able to find out how severe it is. The problem with stenosis - it is easy to ... Read more
John Dodson Hi Kathy, you should be able to find out how severe it is. The problem with stenosis - it is easy to confuse with the normal aging process (I did). You don’t say how old your husband is, —- but better safe than sorry, lots of naps and shortness of breath sound like symptoms to me.
Civita Fahey I kept saying I had no symptoms either , we all are in denial at first and for however long our minds ... Read more
Civita Fahey I kept saying I had no symptoms either , we all are in denial at first and for however long our minds keeps us that way.. we are terrified of surgery.. but, now that it's over, I do realize that I had more symptoms than I allowed myself to acknowledge.. As John said its easy to confuse them with normal aging process.. but, even if we aren't athletes going up a flight of stairs shouldn't make us out of breath or sleep all the time.. you are his best advocate.. as a patient, again, the idea of heart surgery sent me for a loop.. I had myself on my death bed.. ( I am a bit of a neurotic).. but, after reading all the stories here and speaking to a few of the heart brothers and sisters, I realized that I could do this and I would be ok.. still was scared as I'm sure your husband is deep down. Help him understand that the sooner this is done the better it is. .Doctors can only help when we allow them to.. if they dont know you have symptoms then they say to wait.. in the long run he will appreciate that you helped him get out to denial.. its a scary thing for both patient and family..but I finally saw it as a sign, the Lord was telling me I needed this fixed before it was too late.. best of luck
Kathy Stein Thank you so much everyone for your comments/suggestions, etc. I appreciate it so much!
John Clough Yes I had no symptoms worked out like a maniac I then found out that I needed my valve replaced asap, ... Read more
John Clough Yes I had no symptoms worked out like a maniac I then found out that I needed my valve replaced asap, I am 55
Bob Fessler I'm with Gerald on this. You should talk to your husband about telling the doctor the symptoms you h ... Read more
Bob Fessler I'm with Gerald on this. You should talk to your husband about telling the doctor the symptoms you have noticed. Maybe he is not aware of them. I know that I wouldn't want my wife talking to the doctor without my knowing it. Just my personal opinion.
I am from: Madison
I had the exact same thing. It was misdiagnosed for quite awhile with a prolapsed mitral valve ... Read more
I had the exact same thing. It was misdiagnosed for quite awhile with a prolapsed mitral valve. My youngest brother also has a bicuspid AV. Only 1.5 - 2% of the population have BAV, but once found in the family, the stats jump to 25%. You need to insist that your husband's siblings and children get an echo. It has a genetic component but does not discriminate male versus female.
I would advise you to ask about the peak differential pressure readings. This is a measurement they do during the echocardiogram.
Anything over 40 "/hg is "severe" an needs to be scheduled for surgery. Two things to keep in mind: 1.) between the time that a decision is made to have surgery and the actual surgery date can be months. The last thing you want to have happen is to have emergency surgery by an unknown cardiac surgeon in a local hospital. Experience matters. and 2.) the stenosis accelerates at an astonishing rate. The tighter the valve, the more turbulent the blood flow. With this turbulent flow, the calcium in the blood has a better chance to plate out onto the valve.
In my case, I was clicking along for years at mid 20's "/hg. Last August, it jumped to 50. Two months later, I was at 70"/hg and by the time I got into surgery, the valve opening was down to a pencil point. Also, because the heart is working extra hard to push blood, the heart expands.
If his cardiologist doesn't want to give you the readings, seek out a second opinion.
I had my surgery 12/12/17 and although I'm trying to build my stamina, the way my heart feels and my ability to walk without fatigue is dramatic.
Your husband may not understand what he is supposed to feel like, therefore he may be under reporting his symptoms. Make sure he understands that being "tough" and man-like may land him in big trouble. You need to be your own health advocate. If you simply leave it in the hands of your doctor, you are gambling with your life.
Good luck to you and may God bless. I'll pray that you get the help you and your husband need.
Goodluck