Hello @elina1, welcome to Connect. You may notice I combined your discussion with another discussion titled, "Aortic stenosis & valve replacement." I did this so the other members on Connect already discussing aortic issues would see your message and have a chance to share their thoughts with your post, and so you could read through some of the messages already posted as well. If you are replying by email, you can click on VIEW & REPLY to see where your message is now located and so you can read through previous messages.
@elina1, while we wait for other members to join, would you mind sharing what the current event monitoring is looking for? Has your current provider shared with you what they may be looking for?
He passed out cold, blood pressure very low dehydration. He had a silent stroke found out in February. I guess they are trying to figure if it was heart related. The low blood pressure wasn't a concern until April. We're trying to figure this out too.
My original post got cut off some how. Here it is....
I have congential heart defect( bicuspid aotic valve stenosis) evidently I was born with this
( bicuspid aortic valve) and never knew, also have a heart murmer. I never had any problems as a child. I swam competitively until my late teens. Fast forward to today, I'm a male 52 years old in fairly good health, some cholesterol
issues, but under control with a statin drug. In 2016/2017 I was diagnosed with bicuspid aortic valve stenosis, after experiencing loss of energy, fatigue, chest tightness, some light headedness/ dizziness and shortness of breath, sometimes just doing minimally everyday tasks.
I've had two echos, heart cath, two treadmill stress tests.
Since the first tests, until the most recent tests in January 2019, my stenosis is showing more narrowing. My cardio has suggested I need to have valve replacement surgery( mechanical valve) in the next 3-6 months and has recommended a surgeon along with more testing. Im overwhelmed at the thought of facing open heart surgery... what is my life expectancy without having the surgery? 3-5 years? I have alot to digest right now. What question should I be asking? Very overwhelmed.
He passed out cold, blood pressure very low dehydration. He had a silent stroke found out in February. I guess they are trying to figure if it was heart related. The low blood pressure wasn't a concern until April. We're trying to figure this out too.
The NP also checked with cardiologist and he said he can do other measurements. He also has bicuspid aortic valve. She mentioned sometimes there is a hole that some are born with. I guess that is why they are scheduling an echo-tavr. I don't know what that is and why. My husband has no concerns . He doesn't seem to recall things that are discussed. I am just going with info we are given and trying to understand it.
The NP also checked with cardiologist and he said he can do other measurements. He also has bicuspid aortic valve. She mentioned sometimes there is a hole that some are born with. I guess that is why they are scheduling an echo-tavr. I don't know what that is and why. My husband has no concerns . He doesn't seem to recall things that are discussed. I am just going with info we are given and trying to understand it.
Tavr is a less evasive procedure , repairing the valve by going through the groin. I did not qualify for that procedure and had open heat surgery and had the valve replaced with the cow part. The Tavr will provide for a speedier recovery. Hoping the best for your Hubby.
Hello Elina1 and Betty,
TAVR is not used for Bicuspid Valve replacement. It is designed to replace a standard Tricuspid Valve only. I went thru the Aortic Valve replacement surgery on early 2018, and they would not do a TAVR on the Bicuspid Valve. My requesting a TAVR wan't going to happen. A tissue valve is probably what they will want to use. You should discuss the Replacement Valve options very carefully with the surgeon. For folks older than 70 they usually do a Tissue Valve. I was 52 so they opted for a Man Made Valve. If a Man Made Valve is what they will use, ask for the On-X Aortic valve. Has the lowest blood thinner approval by the US Government. Less meds.
For me Valve Replacement Surgery was a breeze compared to the 2 prior Bi-pass and Aneurysm Surgeries. Those were many weeks in the hospital. Cut openen from the side. Don't join that club. I understand there is an age difference, but his body will tolerate it very well. His recovery will just be longer than someone younger. Tell him to keep his chin up! An you keep his spirits up and yours too!! Keep us all informed on the outcome.
Hello Elina1 and Betty,
TAVR is not used for Bicuspid Valve replacement. It is designed to replace a standard Tricuspid Valve only. I went thru the Aortic Valve replacement surgery on early 2018, and they would not do a TAVR on the Bicuspid Valve. My requesting a TAVR wan't going to happen. A tissue valve is probably what they will want to use. You should discuss the Replacement Valve options very carefully with the surgeon. For folks older than 70 they usually do a Tissue Valve. I was 52 so they opted for a Man Made Valve. If a Man Made Valve is what they will use, ask for the On-X Aortic valve. Has the lowest blood thinner approval by the US Government. Less meds.
For me Valve Replacement Surgery was a breeze compared to the 2 prior Bi-pass and Aneurysm Surgeries. Those were many weeks in the hospital. Cut openen from the side. Don't join that club. I understand there is an age difference, but his body will tolerate it very well. His recovery will just be longer than someone younger. Tell him to keep his chin up! An you keep his spirits up and yours too!! Keep us all informed on the outcome.
In all honesty, I thought the bicuspid was separate from aortic stenosis. I don't know what will happen. I find I have to drag information from the cardiology and primary care. They say watch and good, then have to re-explain what has happened and is happening. Thanks for the information.
Hi Elina,
Aortic Stenosis is a stiffening of the valve. Typically something that will happen to all Bicuspid Valves as the tissue gets all fatigued and wore out from having to function in a position of the Heart that really needs a Tricuspid Valve. I had the Stenosis as well and my Aortic Valve was Bicuspid. Two probably go hand in hand. Some folks make it their whole life just fine with a Bicuspid Valve, and some folks like me had theirs failing miserably at 52. You doing the right stuff just being here and speaking with folks who for the most part had these procedures performed on them.
Hi Elina,
Aortic Stenosis is a stiffening of the valve. Typically something that will happen to all Bicuspid Valves as the tissue gets all fatigued and wore out from having to function in a position of the Heart that really needs a Tricuspid Valve. I had the Stenosis as well and my Aortic Valve was Bicuspid. Two probably go hand in hand. Some folks make it their whole life just fine with a Bicuspid Valve, and some folks like me had theirs failing miserably at 52. You doing the right stuff just being here and speaking with folks who for the most part had these procedures performed on them.
Thank you for your tenderness in your comments. My husband turned 65 last October and there has been much happening since then. I remember when we first met with the cardiologist in 2017, he had said when the timing was right it would be open heart surgery. I am afraid he will not be healthy enough. He has dropped to 125 lbs. While he is a small man now, he was very fit, muscular, and worked hard, heavy work till that time. I know everything will go according to plan. We don't know that plan yet. I am sorry you have been through all this and more.I am grateful for taking the time to be there helping to understand. Elina, Colorado
Tavr is a less evasive procedure , repairing the valve by going through the groin. I did not qualify for that procedure and had open heat surgery and had the valve replaced with the cow part. The Tavr will provide for a speedier recovery. Hoping the best for your Hubby.
Thank you! We will keep trying to figure this out with help from his cardiologist, you and Bruce's
I hope for a friend to come into our life. You are very sweet.
Hello @elina1, welcome to Connect. You may notice I combined your discussion with another discussion titled, "Aortic stenosis & valve replacement." I did this so the other members on Connect already discussing aortic issues would see your message and have a chance to share their thoughts with your post, and so you could read through some of the messages already posted as well. If you are replying by email, you can click on VIEW & REPLY to see where your message is now located and so you can read through previous messages.
@elina1, while we wait for other members to join, would you mind sharing what the current event monitoring is looking for? Has your current provider shared with you what they may be looking for?
Hi, thank you for connecting me with the correct group. Had a good comment from Bruce. My husband is okay now but had a slight scare this morning. Since he has the monitor on, the monitor nurse is watching symptoms we reported. I think right now we don't need connections. He is good. Thank you again.
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He passed out cold, blood pressure very low dehydration. He had a silent stroke found out in February. I guess they are trying to figure if it was heart related. The low blood pressure wasn't a concern until April. We're trying to figure this out too.
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2 ReactionsHello @tjmcdon
It has been a while since you last posted. Did you make a decision regarding the valve replacement surgery? I hope you are doing well.
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1 ReactionThe NP also checked with cardiologist and he said he can do other measurements. He also has bicuspid aortic valve. She mentioned sometimes there is a hole that some are born with. I guess that is why they are scheduling an echo-tavr. I don't know what that is and why. My husband has no concerns . He doesn't seem to recall things that are discussed. I am just going with info we are given and trying to understand it.
Tavr is a less evasive procedure , repairing the valve by going through the groin. I did not qualify for that procedure and had open heat surgery and had the valve replaced with the cow part. The Tavr will provide for a speedier recovery. Hoping the best for your Hubby.
Hello Elina1 and Betty,
TAVR is not used for Bicuspid Valve replacement. It is designed to replace a standard Tricuspid Valve only. I went thru the Aortic Valve replacement surgery on early 2018, and they would not do a TAVR on the Bicuspid Valve. My requesting a TAVR wan't going to happen. A tissue valve is probably what they will want to use. You should discuss the Replacement Valve options very carefully with the surgeon. For folks older than 70 they usually do a Tissue Valve. I was 52 so they opted for a Man Made Valve. If a Man Made Valve is what they will use, ask for the On-X Aortic valve. Has the lowest blood thinner approval by the US Government. Less meds.
For me Valve Replacement Surgery was a breeze compared to the 2 prior Bi-pass and Aneurysm Surgeries. Those were many weeks in the hospital. Cut openen from the side. Don't join that club. I understand there is an age difference, but his body will tolerate it very well. His recovery will just be longer than someone younger. Tell him to keep his chin up! An you keep his spirits up and yours too!! Keep us all informed on the outcome.
All the best!
Bruce
Texas
In all honesty, I thought the bicuspid was separate from aortic stenosis. I don't know what will happen. I find I have to drag information from the cardiology and primary care. They say watch and good, then have to re-explain what has happened and is happening. Thanks for the information.
Hi Elina,
Aortic Stenosis is a stiffening of the valve. Typically something that will happen to all Bicuspid Valves as the tissue gets all fatigued and wore out from having to function in a position of the Heart that really needs a Tricuspid Valve. I had the Stenosis as well and my Aortic Valve was Bicuspid. Two probably go hand in hand. Some folks make it their whole life just fine with a Bicuspid Valve, and some folks like me had theirs failing miserably at 52. You doing the right stuff just being here and speaking with folks who for the most part had these procedures performed on them.
All the best!
Bruce
Texas
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2 ReactionsThank you for your tenderness in your comments. My husband turned 65 last October and there has been much happening since then. I remember when we first met with the cardiologist in 2017, he had said when the timing was right it would be open heart surgery. I am afraid he will not be healthy enough. He has dropped to 125 lbs. While he is a small man now, he was very fit, muscular, and worked hard, heavy work till that time. I know everything will go according to plan. We don't know that plan yet. I am sorry you have been through all this and more.I am grateful for taking the time to be there helping to understand. Elina, Colorado
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Hug
1 ReactionThank you! We will keep trying to figure this out with help from his cardiologist, you and Bruce's
I hope for a friend to come into our life. You are very sweet.
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Helpful -
Hug
1 ReactionHi, thank you for connecting me with the correct group. Had a good comment from Bruce. My husband is okay now but had a slight scare this morning. Since he has the monitor on, the monitor nurse is watching symptoms we reported. I think right now we don't need connections. He is good. Thank you again.
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Helpful -
Hug
1 Reaction