Hi, all! Quick back story for those that don't know or remember me. I'm 2 years post mechanical mitral valve replacement and tricuspid valve repair, my third OHS. Last week I went for a routine follow up appointment to see one of my cardiologists. He reviewed my last ECHO and told me my aortic valve has gone from mild to moderate in the past year. He said the pictures on the ECHO are clear and he is confident in what he is seeing. He said he is concerned because of my hypertrophic cardiomyopathy and that my ventricle is stiff and may not tolerate a lot of regurgitation. He said this time it is not an if it needs replaced but when will it need to be replaced. He told me to be on top of my symptoms and not put them off or ingore them, which means he is concerned. What makes this so frustrating is before both my OHS in 2009 and 2016 I was told they may need to replace my aortic valve. Long story short they didn't touch my aortic valve and now here I sit facing a 4th OHS. Just when you think everything is going well you get punched again.
Frustrated by ECHO results
- Thread starter rnff2
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rnff2, I can only imagine the range of emotions you are feeling from the discussion with your cardiologist. I am so sorry that you are facing a possible 4th OHS.
Have you considered going for a second opinion? For me, if I was getting this type of information, I would want confirmation from another expert, but that is just me. I would also want another test to confirm this. I understand the ECHO is clear, but I also understand that transesophageal echos (TEES) are apparently more accurate than standard ECHOS.
Thinking of you and wishing you strength and peace to get through this next hurdle.
One day at a time...
Have you considered going for a second opinion? For me, if I was getting this type of information, I would want confirmation from another expert, but that is just me. I would also want another test to confirm this. I understand the ECHO is clear, but I also understand that transesophageal echos (TEES) are apparently more accurate than standard ECHOS.
Thinking of you and wishing you strength and peace to get through this next hurdle.
One day at a time...
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ottagal...thank you for the support. One day at a time...that's exactly how I'm looking at it.
I have 2 cardiologists, one is local and at the hospital I work at and this one that I just saw is my specialist for my Hypertrophic Cardiomyopathy. I travel and hour just to see him and usually have all my surgeries/procedures done at his hospital. I talked about a TEE with him and with the NP at my local cardiologists office and we decided to hold off for now. That's when he said he could see what he needed to see on the ECHO that the pictures were good and he could clearly see it was worse compared to my previous one. We also discussed that a TEE won't change my current treatment and that we will monitor my symptoms and we can always do a TEE at any point. I guess this shouldn't have suprised me and stressed my emotions since I knew it may eventually come to this. But actually knowing the valve is worse and hearing it out loud so soon after my last surgery just hit me hard. Only having 6 years in between surgery #2 and #3, and to be discussing the possibility of #4 only 2 years later is bad enough, add in knowing 2 different surgeons considered replacing it and then feeling it wasn't necessary at the time makes it more frustrating...the thoughts of, if only if they would have fixed it then I wouldn't have to do this again, cross my mind a lot.
I have 2 cardiologists, one is local and at the hospital I work at and this one that I just saw is my specialist for my Hypertrophic Cardiomyopathy. I travel and hour just to see him and usually have all my surgeries/procedures done at his hospital. I talked about a TEE with him and with the NP at my local cardiologists office and we decided to hold off for now. That's when he said he could see what he needed to see on the ECHO that the pictures were good and he could clearly see it was worse compared to my previous one. We also discussed that a TEE won't change my current treatment and that we will monitor my symptoms and we can always do a TEE at any point. I guess this shouldn't have suprised me and stressed my emotions since I knew it may eventually come to this. But actually knowing the valve is worse and hearing it out loud so soon after my last surgery just hit me hard. Only having 6 years in between surgery #2 and #3, and to be discussing the possibility of #4 only 2 years later is bad enough, add in knowing 2 different surgeons considered replacing it and then feeling it wasn't necessary at the time makes it more frustrating...the thoughts of, if only if they would have fixed it then I wouldn't have to do this again, cross my mind a lot.
rnff2;n882057 said:
Well, I would be feeling the exact same way. Don't beat yourself up about this. It is difficult information to digest. So, the good news is your have competent, knowledgeable specialists and they are monitoring you closely.
As trite as this sounds, perhaps put aside a certain amount of time to worry about this daily and then don't allow it to occupy your mind all the time. Take this precious time to enjoy the things that you enjoy and to focus on the 'present'. Much easier said than done. You will get through this.
Be kind with yourself...you are doing the best you can do with your current circumstances.
It takes time to digest and accept.
Hang in there...
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honeybunny
Well-known member
Sorry to hear this rnff2. I would also be extremely upset in the same situation. What exactly were you told in 2015 regarding not needing the aortic valve replaced? Was there any stenosis? If yes, was it so mild that the doctors thought it would be years before it needed replacing? What are your symptoms?
And I agree completely with ottogal about a second opinion and a TEE. I don't think one can compare the tests. I would not undergo a 4th OHS with first having the TEE to confirm the stenosis and also look for any blockages.
Sending positive energy your way. Follow ottagal's advice about trying not to stress too badly. And keep us updated.
And I agree completely with ottogal about a second opinion and a TEE. I don't think one can compare the tests. I would not undergo a 4th OHS with first having the TEE to confirm the stenosis and also look for any blockages.
Sending positive energy your way. Follow ottagal's advice about trying not to stress too badly. And keep us updated.
Busy, busy few days...sorry I wandered away.
Thank you ottagal...I have a great group of doctors and I am confident and comfortable with our plan, for now. I do plan on trying to put it in the background and not worry about it. Can't worry constantly about something you have no control over.
honeybunny...I will eventually have more testing and I'm sure it will include a TEE, there just isn't really a reason to do one now. I'm not having a lot of symptoms right now, some leg swelling off and on and some dizziness at times, but the shortness of breath is only with a lot of exertion, hoping it stays that way.
In 1986 I had a sub aortic membrane removed which has caused both aortic stenosis and regurgitation. It has been mild or mild to moderate depending on who is looking at my ECHO. In 2009 and 2016 I was told my aortic valve may need to be replaced but they wouldn't know until they go in there to see it, I was having OHS for other reasons. Both surgeons said they didn't feel at that time that it was necessary to replace it although there was both stenosis and regurgitation. It's just so frustrating...thinking you are doing good and then they tell you this.
Thanks for the support!!!
Thank you ottagal...I have a great group of doctors and I am confident and comfortable with our plan, for now. I do plan on trying to put it in the background and not worry about it. Can't worry constantly about something you have no control over.
honeybunny...I will eventually have more testing and I'm sure it will include a TEE, there just isn't really a reason to do one now. I'm not having a lot of symptoms right now, some leg swelling off and on and some dizziness at times, but the shortness of breath is only with a lot of exertion, hoping it stays that way.
In 1986 I had a sub aortic membrane removed which has caused both aortic stenosis and regurgitation. It has been mild or mild to moderate depending on who is looking at my ECHO. In 2009 and 2016 I was told my aortic valve may need to be replaced but they wouldn't know until they go in there to see it, I was having OHS for other reasons. Both surgeons said they didn't feel at that time that it was necessary to replace it although there was both stenosis and regurgitation. It's just so frustrating...thinking you are doing good and then they tell you this.
Thanks for the support!!!
