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ddio

New member
Joined
Apr 18, 2022
Messages
3
Hi everyone.

I'm a 38 year-old male living in Portland OR. A few weeks ago I was having some heart palpitations and had an echo. Turns out I have a Bicuspid Aortic Valve with some regurgitation. No signs of stenosis and heart function was apparently normal. I haven't seen the cardiologist yet but I have spent these weeks unable to focus at work as my emotions go from panic to non-stop research on all this. I have many questions but will ask in one of the other forums.
 

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
761
Location
New Zealand
Hi ddio,
its certainly alot to take in, I was 38 when I had my bicuspid valve replaced so I know exactly where you are coming from,
6 years on and being on this forum life has gone on as normal as it can be.
Sounds like you are along way from surgery if ever (hopefully never).
I guess you maybe aware of the relationship between having a bicuspid valve and aortic aneurysm?
Plenty of helpful members and information here.
 

Superman

Well-known member
Joined
Oct 3, 2009
Messages
1,540
Location
Grand Rapids, MI, USA
Welcome to the forum! It’s lack of knowledge that is both peaceful and can be disastrous. You know and you have a team following you. Take comfort in the fact that they are aware and will take measures when they are necessary. We will watch for your questions.
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,162
Location
kansas city, mo
Hi everyone.

I'm a 38 year-old male living in Portland OR. A few weeks ago I was having some heart palpitations and had an echo. Turns out I have a Bicuspid Aortic Valve with some regurgitation. No signs of stenosis and heart function was apparently normal. I haven't seen the cardiologist yet but I have spent these weeks unable to focus at work as my emotions go from panic to non-stop research on all this. I have many questions but will ask in one of the other forums.
I was born with Bicuspid Aortic valve, defect with stenosis. Had repair in 1973 at age 8 and replacement of the Aortic valve with St. Jude's' Aortic leaflet valve, taking warfarin and inr done every month. No restrictions. And am 57 years old now. Had the replacement on 2001. Still alive and able to so what I want. I had the replacement in 2001 at age 36. Just keep being alive.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,501
Welcome to the forum.

My bicuspid with aortic stenosis was diagnosed at age 52. I had my surgery about 20 months later. It can be a really tough thing to accept when you first get the news. I certainly had an emotional couple weeks following my news. You are in the same situation as me, in that you have a medical team monitoring your condition so that you can get the property treatment when the time comes.
It is not as bad as it seems. The surgery has a remarkable success rate and after the surgery you can live a normal life after recovery.

Please ask any questions that you have. This forum was an amazing resource for me and it can be for you too. Take your time and learn about your condition. Write down a list of questions for your cardiologist and take a deep breath.
 

vitdoc

VR.org Supporter
Joined
Apr 16, 2017
Messages
282
Location
Southern Ca.
I am not sure what the percentages are for bicuspid valves to lead to surgery but without stenosis and mild regurg you could go many years without any need for intervention. So avoid DR. Google and relax. See a decent cardiologist who hopefully will clarify your status.
 

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
761
Location
New Zealand
Unfortunately its apparantly around 80% of BAVs lead to surgery... I guess glass half full theres a 20% chance it won’t lead to surgery, thats a 1 in 5 chance it wont so much better odds than a lottery ticket 😊🤞

I also think its subjective and depends what site you read, I also remember reading on another site 80% of those with a BAV will have problems and of those 80% half of them would require surgery.
Maybe we need a study done in a genetically homogeneous population... like 5ft 6” males who are left handed from Tasmania... cause otherwise any scientific study would be just lke fake like not believable lke I know better and I’ve got a personal vendetta guff 🤔😝
 
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ddio

New member
Joined
Apr 18, 2022
Messages
3
Thanks for the responses. Just to clarify the regurgitation is "moderate" so I am thinking this will likely lead to surgery.
 

dornole

Well-known member
Joined
Jan 5, 2014
Messages
807
Location
Minnesota, US
I hope you get to see the cardiologist soon. I’ve been in that place where the heart thing preoccupied me with brooding and that sucks. I even bought a preemptive lift chair one time! But honestly you could go for DECADES without needing surgery. I have had moderate or mod-severe regurgitation for 19 years now - AND I also have mod to mod severe stenosis. Do see your cardiologist as scheduled but aside from that, well everybody’s got health issues and you can cross the surgery bridge when you come to it. I’m sure you’ve got other fish to fry in the meantime. There’s just not much you can do either way. 🤷🏻‍♀️
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,162
Location
kansas city, mo
I hope you get to see the cardiologist soon. I’ve been in that place where the heart thing preoccupied me with brooding and that sucks. I even bought a preemptive lift chair one time! But honestly you could go for DECADES without needing surgery. I have had moderate or mod-severe regurgitation for 19 years now - AND I also have mod to mod severe stenosis. Do see your cardiologist as scheduled but aside from that, well everybody’s got health issues and you can cross the surgery bridge when you come to it. I’m sure you’ve got other fish to fry in the meantime. There’s just not much you can do either way. 🤷🏻‍♀️
and I went fearing Cardos for several years with going through life changes and no insurance. Then I get to working and getting insurance, had a quack Cardi who took my BP and did not know how to read it. Never had a quack Cardo do that. But glad two years later got with a great cardio who referred me to a great surgeon. Hard when you get a quack and scares you off.
 

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