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

Thank you for all your help.

 

[DavesMom]

Hi Graham,

I sure understand why you'd be petrified but as someone who's been there, done that, I hope I can provide a little reassurance. My valve was 0.6 sq cm when it was replaced and I had an aneurysm that the surgeon decided to repair at the same time. That was sixteen years ago and I've been doing very well since then. Only prob has been the development of another aneurysm in my ascending aorta.. It's currently 4.6 cm and being watched. How large is your aneurysm?

I was lucky to have a smooth, uneventful recovery. I was also lucky in the fact that I was teaching at the time and had an extra few months to recover due to summer holiday. And I'll tell ya, after that I was kinda like a different person - more energetic, more clear-minded and so glad I'd had the surgery.

I opted for the mechanical valve since I was only 42 at the time of my surgery and wanted it to last. Don't let coumadin scare you. I will say I'm unhappy with it at the moment since my level was way down on my last test for no reason. However, they adjusted my dose and I'm sure it'll be back to normal when I test next week. The only other time there's been a problem was when I started another medication. Otherwise, it hasn't been a problem at all.

As I said, I KNOW it's scary. But my valve is still clicking along well after sixteen years and there are people on this board who've had theirs even longer. You will find a wealth of information and great people on this site who'll help you through this.

Keep us posted and best of wishes. Cheers!!!

 

[big_L]

First off, you will be fine. I was 54 when I had surgery two years ago. Yes - it's a hurdle and it's stressful. You're in the worst time - when you are told you need surgery and you're scared, full of questions and doubts.

You likely will not have much pain. After the second day, I only asked for pain meds at night in the hopes that they would help me sleep better. I still have a 3/4 full bottle of oral pain meds from surgery.

I chose mechanical as the risk of re-surgery is lower. I don't find the warfarin to be a huge bother. This can be like a Chevrolet vs. Ford question. LOTS of information on the forum about it and lots of strong opinions either way. Do your research and you'll decide which is best for you.

The statistic that stuck with me was this - when you reach the critical stage, which is less than 1 sq cm of valve area, the risk of dying unexpectedly is approximately 1% per month. That's 12% per year. Balance this against a 1% chance of not surviving surgery. And remember that many of the surgical patients are 10-20 years older than you are.

Re - recovery. You will feel like you've been run over by a truck for a day or so. Then a bit better. The sitting up and walking that you'll do really helps. Use your spirometer religiously and your lungs will thank you. Once you get home after 4-5 days and get some decent rest, you'll get stronger daily. In 2 weeks, you'll feel pretty darn good, but maybe not as much stamina.

You will likely be shocked at how much more "wind" you have once you heal and start exerting yourself.

Good Luck.

 

[carolinemc]

Graham40, You are just scared with all this newness to the upcoming surgery. I had a heart murmur from birth to age 36, had aortic valve replace, and at 50, still alive. Even with surgery, you can live a long time after, many years. And you are still young yet. I am on warafin which is the generic of coumadin. You can still live a long life. Warfrin is not bad at all, just test when they say. But you can still be very active and never let it all get you down. Many people have OPS and lead active, full lives for years after. There are a lot of those here that had the surgeries, repairs and such 30, 40, 50, 60, 70 years ago and still are going strong. You keep visiting and postin here, questions we will answer from experience. Hugs for you today. You be brave, strong and fierce. You will be fine.

 

[AZ Don]

Not sure what you are referring to when you say 50% die in the first 2 years. With surgery the rate is probably more like 2% and that would include people older and less healthy otherwise than you. Without surgery your condition would become very dangerous over time. If your Dr's thought your condition was imminently dangerous they could have taken you in for surgery straight away. There have been cases discussed on this forum where that has happened.

Re. Recovery, I came home from the hospital on day 5 and only took the Rx for painkillers once, more out of curiosity than anything. Pain was not an issue but sleeping in my bed was not really an option for me for the first month. I did well using a recliner though. By 6 weeks you should be able to drive and do most of the things you want. By 2-3 months you should be allowed to do pretty much anything you may want. Some say that full recovery can take 6 months to a year, but I think I was at least 90% by 3 months. Still, it is different for everyone.

Re. valves. There are many, many discussions on this forum. At your age, I think the general recommendation is for a mechanical valve. If you were a little older than I think the general recommendation would be for a tissue valve. Many Dr's have a preference for one or the other. With a mechanical valve you have warfarin for the rest of your life and some increased risks for bleeding or clotting - which can be mitigated to some extent by self monitoring of your INR levels - how to do this is also discussed thoroughly in these forums. With a tissue valve you don't have to take warfarin, though sometimes people end up on warfarin anyways for other reasons, and you can expect another surgery within 20 years. It may be possible that the next surgery can be minimally invasive or even TAVR which inserts a valve through your artery, but for now at least, TAVR is considered higher risk than open heart surgery and so generally only recommended in people that are not candidates for open heart. Exactly what will be available in the future is not known but there are many promising options in the works such as tissue valves grown from stem cells and mechanical valves that don't require warfarin.

How soon is your surgery? Good luck with it. You will likely feel much better soon after.

 

[pellicle]

Hello and welcome from a part time irishman

(only been there the once, planning to go back "home" again next year http://cjeastwd.blogspot.com/2014/05...at-delvin.html )

Recently been diagnosed with a Bicuspid Aortic Stenosis valve of 0.7 sq cm and a large ascending Aortic aneurism Need Advice

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.

all sounds good ... sounds like you're well placed for a recovery

I get nose bleeds every day and I am on no blood thinner medication

strange ... why is that? (you're not saying the wrong things in the pub are ya?)

Is my condition very dangerous at the moment?

I'm of the view that the danger would have been made clear to you by your doctor. If not then the Dr is an idiot and change. Avoid heavy liftnig and straining and you'll be right till surgery

I hear 50 % of people die in the first 2 years.

you heard that from a doctor? Were they talking about the 19th Century?

Which is the best valve to go for as I am very wary of taking warfarin as I hear long term effects are bad?

the "long term effects" of warfarin are something between zero and "noone can clearly identify anything". Despite 50 years of usage the only really significant issue is being stupid and ignoring your dose, or being incompetent and not testing your INR.

I had a mechanical valve put in in 2011 and my aneurysm fixed. I'd had a bicuspid aorta as a kid which was fixed (open heart surgery) and then replaced (another open heart) when I was 28.

Is the recovery very painful or are you full of painkillers.

well I didn't take any pain killers after the stay in hospital, which was about a week. I've not found it particularly painful, and have hurt myself worse in some ways when I've been hit by cars (one car at at time, different years) on my bicycle.

How long is the full recovery time?

by about 8 weeks you'll be able to do most things (I was moving my father out of his apartment into a nursing home at about 8 weeks, carrying furniture and boxes.

If you feel like a chat, please use the Message system to contact me and perhaps we can hook up by skype. Click my name, then click to send message.

Best Wishes

 

[Paleowoman]

I read somewhere that people who can have nothing done because they're too frail to have surgery (days before TAVR) would live about a further two or three years and would be given palliative care. I would suppose that that is where Graham got the 50% of people die in the first two years from from. It's when nothing is done.

54 isn't too young for a tissue valve. II all depends on the person. There's a thread somewhere on the forum in which valve choice is discussed and one person's surgeon told him he would have tissue if he needed AVR and that he was in his early 50's. It's very much an individual thing. And just as some people with tissue valves need warfarin in the end regardless (plenty of people without heart surgery need warfarin when they're older - stroke patients for example), so some people with mechanical valves need a replacement 're-do'. Swings and roundabouts. All of us here need/needed a valve replacement and have no choice about that. What it's replaced by is what the person has to feel comfortable with as they have to live the rest of their lives with it !

 

[MrsBray]

I was 42, my opening was severely calcified and "fishmouth" said the surgeon, stuck open maybe? at .7 cm2. No aneurysms. I have a mechanical valve from On-X and am on warfarin. I have experienced no life-altering side effects from the medication. I was also terrified, and have also had my siblings and their children tell their doctors about my valve. So far, no issues. I had a very boring recovery and am much healthier now than 18 months ago. My previously very low blood pressure is much more normal now, and my frequent headaches are a thing of the past. Don't get me wrong - it wasn't easy by any means, but it wasn't nearly as horrid as I was expecting it to be. What else?
-Meredith