Bicuspid Aortic Stenosis valve 0.7 sq cm and a large ascending Aortic aneurism Help

[Graham40]

​​Recently been diagnosed with a Bicuspid Aortic Stenosis valve of 0.7 sq cm and a large ascending Aortic aneurism Need Advice
My name is Graham. I am a 54 year old male living in Ireland.6 ft 2” tall and slim build.
I was checked for a heart mumur
Recently been diagnosed with a Bicuspid Aortic Stenosis valve of 0.7 sq cm and a large ascending Aortic aneurism in May. Now waiting for surgery.
I had a CT scan and heart is ok apart from the above problems. I have no build-up of cholesterol and all my heart veins are clear.
Recently been diagnosed with a Bicuspid Aortic Stenosis Valve of 0.7 sq cm and a large assending Aortic aneurism My lungs were checked and are perfect but I am out of breath since last May and now recently my blood pressure which was always normal has dropped and I am having headaches every day.
They only go away if I drink coffee which raises my blood pressure, only 2 cups a day.
I get nose bleeds every day and I am on no blood thinner medication

My questions are
Is my condition very dangerous at the moment?
I hear 50 % of people die in the first 2 years.
Which is the best valve to go for as I am very wary of taking warfarin as I hear long term effects are bad?
Is the recovery very painful or are you full of painkillers.
My 18 year old Daughter has a heart murmur as well. I am having her checked out.

How long is the full recovery time?
Any replies greatly appreciated

 

[Heart Of The Sunrise]

Graham: The big question I have is how big is your AA. Mine was 4.5 cm when discovered. It was 4.9 when I first saw my surgeon four months later. He wanted to operate in two weeks, we waited a month, 5.0 is surgery ASAP. Wise to check your daughter out especially if she has a murmur.BAV run in families.
I have a nephew who has it, It killed my uncle. My dad and aunt also had it.
I choose the ON-X valve with the attached graft. Coumadin is no problem. Recovery was much easier than my bowel resection surgery of 2/2008.
My recovery was 10 weeks. Then 6 weeks lite duty once back at work.. No formal cardiac rehab.....just walk, walk, walk!

 

[jumpy]

Hi Graham,

Lots of great information on this site and tons of information on Warfarin etc. I am 44 and also at 0.7cm with a bicuspid valve which will require surgery in the next couple of months. At my age I don't like the statistics for re-op of a tissue valve but you might fare better being a little bit older. I'm awaiting the CT scan to see if I'm a candidate for the Ross Procedure, otherwise it'll be mechanical for me. I'm not sure where the 50% fatality stat comes from but treated it is a very good statistical outcome. I would ask your cardiologist about restrictions to minimize any potential risk.

Good luck.

 

[Paleowoman]

Hi Graham - welcome to the forum !

Have you been given a date for surgery ? A valve area of 0.7 sq cm would appar to be 'severe' so it shouldn't be a long wait, especially since you appear to be symptomatic. Do push your cardiologist and GP about this.

50% of people die within two years if they are 'severe' and do not have aortic valve replacement. As long as your valve replaced you won't be in that 50% ! I can't comment on your anyeurism as I never had one, but others here will surely advise.

My bicuspid aortic valve was replaced when the valve area size was 0.9 sq cm and my pressure gradient was peak 68 mm/Hg. I was asymptomatic. Usually they like to perform surgery before you have symptoms, another reason for you to push your cardiologist and GP since you obviously have symptoms now with lower blood pressure and being out of breath.

Recovery is very much an individual thing. The cardiac surgeon told me three months but it was nearly a year before I was really back to what I was pre surgery, and I had been very fit and healthy prior to surgery. Since you have symptoms you may feel 'better' compared to how you are now very soon though.

Pain on recovery is again very individual. You're given good pain killers - opiods - post surgery. These do mess up the body somewhat, especially the gut, but the less pain you are in the better you can do walking and breathing exercises which aid recovery.

What is the best valve ? That depends on you. How old you are and what your preferences are. I was 60 when my aortic valve was replaced - I went with a tissue valve as I didn't want to take warfarin and didn't want to hear the ticking of a mechnical valve. I will need a 're-do' one day as the tissue valve doesn't last more than 12 to 15 years I was told, but I don't mind as techniques get better all the time.

Re your daughter - the heart murmur from my bicuspid aortic valve was first heard when I was 25. It was another 35 years before the valve needed replacing, so the fact that your daughter may have one doesn't mean she may need surgery soon, and maybe she won't ever need it, but it's good that if she does have BAV it has been discovered now rather than being discovered when it's got more serious as with you.

Btw, I'm from the UK so not too far away !

 

[Vincent63]

Graham, welcome to the forum ... This is a great place for advice. I had a bicuspid aortic valve replaced a month ago exactly ... And I am well back on my feet able to walk 5 miles on the flat and feel great. I am 52 and opted for mechanical as personally I wanted to ideally only have the op once and for me warfarin is an acceptable compromise .. But this personal .. There is no right or wrong .. Just what is comfortable for you.. Pain and recovery seems to be personal and different by individual. 1 month on I have very little pain and stopped all pain killers except the occasional paracetamol about 10 days ago. I intend to have my kids checked to see if they have inherited this ( both are in early twenties) and I had bo idea I had this until I collapsed at end of May having put my symptoms down to working too hard and getting older. The good news is having had the diagnosis you can get this fixed. Good luck and look forward to reading more posts from you. ... From another Irishman ... Living across the water ....

 

[honeybunny]

Welcome Graham. I hope you find this forum as helpful as I have.

I was diagnosed with BAV and aortic stenosis on May 29 of this year and this was confirmed with a second opinion two weeks later when it was determined the stenosis is severe. I was told it was not critical but I'd need surgery within a year. For insurance reasons I wanted it done this year and have surgery scheduled for September 30, 10 days after I turn 61. I'm looking at the new valve as a birthday present that will extend my life.

I had shortness of breath and my blood pressure (usually very low) had been creeping up. I'd recently quit smoking after 44 years and figured the spoor breathing was due to mostly that. But my brother had a recent heart attack (blockage) so I decided to check it out.

I was going to get a mechanical at first, even though I wasn't crazy about being on Warfarin, to avoid another surgery. Then I read about the mechanical valve ticking and decided I wouldn't deal with that very well; I hate to hear a heart beating, it freaks me out. Folks here have no problem with ticking but it would be an issue for me. I messaged Paleogirl and she shared her story which helped me make up my mind to go with tissue. I am very comfortable with my decision.

My point is that the choice of valve is very personal. I would rather deal with another surgery than listen to even a slight ticking while someone else would think that's crazy

Just keep reading and asking questions. There is no history of heart disease in my family so I was stunned when I got the news. I've alerted family members so they are aware of the BAV possibly being hereditary. I feel very fortunate my condition was diagnosed before it killed me as it did my husband 15 years ago.

Best of luck~