Can anyone share any experience on Acquired heart valve disease?
I originally diagnosed with BAV (fused R-L cusp) however clinical history and poor ...Read more
Can anyone share any experience on Acquired heart valve disease?
I originally diagnosed with BAV (fused R-L cusp) however clinical history and poor health has now made them think it could be acquired.
Not seen or heard much on this.
Currently waiting OHS.
George Gardopee Hi Adam. The literature defines “ acquired valve disease” as valve problems that develop on previ ... Read more
George Gardopee Hi Adam. The literature defines “ acquired valve disease” as valve problems that develop on previously “normal” valves as opposed to defects present from birth. I believe that actual valve problems are often a combination. In my case I had a minor murmur that became severe regurgitation after a bout of endocarditis. I suspect my murmur would never have affected my health but a poorly-functioning mitral valve apparently did attract bacteria, thus the infection which in turn further degraded the valve. So I guess I could argue that my issues were “acquired” but a case could be made that I always had a defective valve.
Richard Munson I would say acquired for me, as it was first detected after 70 and i spent the better part of 50 year ... Read more
Richard Munson I would say acquired for me, as it was first detected after 70 and i spent the better part of 50 years playing non stop basketball and then racquetball and ran 10 k races in between. Plus, never had a symptom which they kept asking about after every echo. When i hit 78 i finally said “ enough already” fix the darn thing before i’m so old its too late. The rest is history
I have recently been diagnosed with very severe aortic regurgitation with dilated left ventricle and moderate increase in mass.
I am waiting to be referred to a surgeon, however it has taken since Sep/Oct when I had an initial echo to just get to this stage. I have had an echo, TTE and MRI scan during this time.
I have visible signs of AR - neck pulse visible and I can feel my pulse when I go to bed. Been finding it difficult to sleep.
i can also see my heart beating in my chest. Can visible see left nipple pulsating and recently been experiencing uncomfortable pain under left armpit, chest and left shoulder blade.
Did anyone else experience or has experienced similar issues? And any advice about what I can do pre-op and questions I should have for surgeon/where I should get this done. I live in the U.K. and I am 32 years old.
I found Adam via YouTube and came across all your stories here.
I am 32 years old and have recently been diagnosed with a leaking bicuspid ...Read more
Hi all,
I found Adam via YouTube and came across all your stories here.
I am 32 years old and have recently been diagnosed with a leaking bicuspid aortic valve.
I know this isn’t the place for medical advice, however I have been told I have moderate to severe aortic regurgitation. LV has enlarged but well compensated. I have high blood pressure too.
To say I am struggling with the diagnosis is an understatement.
I haven’t yet spoke to my consultant as things take ages here in the UK, however what happens next? Is it surgery or is medication an option to get blood pressure under control and possibly reduce LV which is dilated.
Any advice or info would be very much appreciated.
all the best,
Adam
rich monoson Dear Adam, this is most definitely not medical advice but from what you've indicated I believe it is ... Read more
rich monoson Dear Adam, this is most definitely not medical advice but from what you've indicated I believe it is time to speak with your consultant. The Aortic regurgitation appears to have reached that point to consider surgery. The enlargement of the left ventricle is significant. Are there symptoms (such as shortness of breath) that correlate with AV reguritation? I had AVR surgery in April 2019. From a laypersons perspective the change in the heart structure is very significant and it is best to be proactive in getting together with your health consultant. You'll find this HVS community filled with great advice from kind and compassionate members.
Adam Pick Adam... Welcome aboard! I can only echo Rich's comment above - to see your doctor/consultant - t... Read more
Adam Pick Adam... Welcome aboard! I can only echo Rich's comment above - to see your doctor/consultant - to get actionable advice and next steps for your specific diagnosis. The good news is that you are acutely aware of the situation and are taking the steps to figure out how best to manage and treat your leaking bicuspid aortic valve. Considering you may be on a path to surgery for aortic regurgitation, you may want to learn more about aortic valve repair techniques. That approach, if available to you, could be a great long term fix. I'll post some information about that below. My thoughts are with you!!!
https://www.Heart-Valve-Surgery.com - The use of aortic valve repair techniques are often overlooked as a long-term and durable treatment option for patients...
Thomas Brusstar Hi. I had a mitral valve that was leaking severely. My heart also compensated to some extent, but y ... Read more
Thomas Brusstar Hi. I had a mitral valve that was leaking severely. My heart also compensated to some extent, but you don’t want to make it work overtime or remodel itself any longer than necessary. My open heart surgery at age 54 was pretty easy, and I’m sure you’d do fine. The uncertainty during diagnosis and awaiting surgery are super stressful, so it’s a relief to finally get the surgery done. It’s a plumbing problem, so medicine can’t help. I’ve always found this site helpful, so keep coming back and asking questions.
Janelle Hurst I just had mitral valve repair 3 weeks ago because of moderate to severe regurgitation and enlargemen ... Read more
Janelle Hurst I just had mitral valve repair 3 weeks ago because of moderate to severe regurgitation and enlargement of the left ventricle. In my research I came across a lot of articles stating that enlargement of the left ventricle is a trigger for surgery...it's a sign that your heart is having to work too hard. I know the thought of having heart surgery (especially at such a young age) is daunting, but there are so many people here who have had similar diagnoses/experiences and we are all here to support you. I'm only 41, so I was shocked when I found out I needed surgery. The good thing is that most valve surgeries are not emergent. As long as you're not having severe symptoms, it can usually wait a few months or more. The waiting is really hard, but you have time to do a lot of research on it, and find a surgeon that you trust.
Steve Neal Where in UK are you based - I’m in Bristol and at the Bristol Heart Institute they have been great
Dan Rhoden Adam, I think we have all experienced similar thoughts and emotions initially. Take heed of the adv... Read more
Dan Rhoden Adam, I think we have all experienced similar thoughts and emotions initially. Take heed of the advice provided. Also, try the Learning Center on this site, especially Heart Valve News and Videos. Lots of educational items. You are your best advocate for your health journey. Lots of people supporting you as well. Wishing you to the best of luck.
Adam Robinson Many thanks everyone. I am meeting my surgeon next week and will take all your experience and kind wo ... Read more
Adam Robinson Many thanks everyone. I am meeting my surgeon next week and will take all your experience and kind words on board. Sorry for having taken so long to get back. I am still trying to get my head round this.
Adam Robinson Many thanks to both of you. Appreciate the info and kind words of support and encouragement
I am from: Edinburgh, United Kingdom
I originally diagnosed with BAV (fused R-L cusp) however clinical history and poor ...Read more
I originally diagnosed with BAV (fused R-L cusp) however clinical history and poor health has now made them think it could be acquired.
Not seen or heard much on this.
Currently waiting OHS.