New guy BAV and AR dilation

[Tdot]

Hi everyone, I'm new here and have been following this site for some time. I finally got my account activated. Looks like a great site and I'm now glad to be a part if it. I just wanted to introduce myself and get some input from you all.

I'm 30 and 6'1 180lbs was diagnosed with BAV 5 years ago also have a dilated root at 43mm and the valve working fine. I was super anxious when i found out about my valve but getting better each year. I still get anxious before my yearly echoes (coming up Monday). Became aware of the dilated root only 2 years ago. My cardiologist said it went from 40 to 42 to 44 so he sent me for an MRI and its actually 43. Also the MRI showed the rest of my aorta to be ok. At last years appointment the echo measured 42 so I know for sure it's been stable for 2 years. Also the measurement of 40 was done at a different place and different tech so I wonder if it could have actually been 43 as well or if it actually grew?

I also experienced a lot of panic attacks and stress when it went from 40 to 43 ( if in fact it did grown) perhaps that could have caused it to get bigger?

Although I get anxious before appointments the stress and anxiety are gone, I didn't even think About it this year up to now. I decided that constantly worrying about something you cannot control is a waste of life. The other argument I made to myself is there is a 1-2% chance of dying in a car accident and 25% chance of dying of cancer In a lifetime so why worry about the heart thing any more than that?

Has any one here had to get their root replaced? Looking for some opinions on chances of my root needing replacement before the valve does. My cardio tells me I should be ok for decades but who knows.

Anyway thanks for listening (reading)

 

[camgough]

Hey Tdot, are you from Toronto? I was 30 when I found out I had BAV, and also a huge aortic aneurysm (67mm). Like you my valve was working good so I had valve sparing aortic root replacement surgery. They replace the aneurysm and root, then reinsert the native valve. It was an option for me, and may be for you down the road. I'm on no meds and have annual check ups. I'm 32 now, also 6'1 and 200lbs. Any questions send me a message.

Cam

 

[Tdot]

Hey Tdot, are you from Toronto? I was 30 when I found out I had BAV, and also a huge aortic aneurysm (67mm). Like you my valve was working good so I had valve sparing aortic root replacement surgery. They replace the aneurysm and root, then reinsert the native valve. It was an option for me, and may be for you down the road. I'm on no meds and have annual check ups. I'm 32 now, also 6'1 and 200lbs. Any questions send me a message.

Cam

Hi thanks for the response, yes I'm from Toronto are you? How did you find out about your condition? Symptoms? Was your root at 67 or other part of the aorta? Good thing you found out about it in time. I'm hoping to stay stable for some time but have my annual tomorrow and starting to get a bit anxious.

 

[Roberta]

Hi, Tdot,

I don't have any info for you, but just wanted to wish youa warm welcome! Sounds like Cam will be a good contact for your upcoming surgery.

Keep us posted. When we get news 'like this' it is normal to have some anxiety and stress. I found that it took me a couple of month to get 'used to the idea' that surgery was impending and also decided to 'stop worrying' about what I couldn't control

All the best!

 

[Tdot]

Thanks for the welcome. Just to clarify I'm not headed for surgery just yet, at least I hope. Just monitoring things for now hoping everything is stable for a while. I do have my yearly echo tomorrow so Ill find out soon if things have changed.

 

[Jkm7]

Hi and Welcome. Happy you found us but sorry for the reason.

No matter how long you have ECHO's and are followed, most of us get a bit of anxiety before our appointments. It seems to go with the territory.

I just had my four and a half year check after my second OHS and had that anxious feeling just prior. Report was good and I settled down again until the next time.

You well could stay stable for a long time. It's hard to know but we'll help you in any way we can while you remain in the 'watch' mode.

Good luck.

 

[epstns]

I can't speak about aortic root issues, but I can say that as the years go by, I have had less and less anxiety about valve echo's. I was monitored for almost 10 years before surgery and am now 20 months post-op, and I've about stopped worrying about annual echo's. With "just" valve issues (no root issue), I figure that if I feel good, the valve is going to be good, and not to worry.

 

[Fundy]

Since the majority of those with BAV never need surgery for the valve or an anneurysm the chances are probably still real good that your valve itself won't need replaced ever. I think the probabilty changes quite a bit once aortic stenosis or regurgitation changes from a classification of mild to moderate. Any idea what the present report is on the aortic valve itself?

 

[Rachel]

Hi, welcome!

I had an aortic aneurysm of 5.2cm and also a bicuspid aortic valve. My situation was a little different in that I found out by accident at age 45 that I was born with the bicuspid valve (which was failing), while at the same time I also discovered I had an aneurysm, so I was never tracked. My surgery was 3 months from diagnosis. Still, I remember having lots and lots of panic attacks during the time I was waiting for surgery.

I think the worst part is the waiting, that and knowing that every situation and every person is so different, no one can really say how long it will be before you’ll need surgery or if your valve will need replacement before or after your aorta, or ever. The good news is that you are being watched, and you’re tall (I think that height does matter in the case of an aneurysm – taller is better - someone correct me here if I’m wrong about that)

New diagnosis such as these are hard to digest! BTW, my surgery went well and I'm doing great now.



Rachel

 

[Tdot]

Hi everyone, thanks for all the responses I'm really glad I found his place. I just had my yearly echo today and it went well. In summary the valve works fine, trivial regurg, no stenosis or calcification and the root is still at 43 so it's been stable for at least the last three years. The tech was awesome she walked me through it all and really put me at ease.

I also coped with the anxiety better this time, thanks in part to this site. I was a 6/10 on the anxiety scale vs 20/10 and full out panic like the last few times. My BP was 120/66 after the stress test which is unheard of for me at the dr office...having my wife there also helped.

So I get the year off and will worry again next year I guess. In the meantime Ill be checking in here now that I'm a member.
Also it's great to hear that so many people on here did well with surgeries, makes those an inspiration for people like me to know its possible and not the end of the world.

 

[camgough]

Hey Tdot, I'm from Kingston, Ont. I'm glad your test were good. I had my annual 2 weeks ago in Ottawa and have not heard anything back yet. I should probably call.

I had no symptoms and my family doctor referred me to a cardio after finding right bundle branch block and slightly high blood pressure.

Cardio exam went well until echo, that found the ascending aortic aneurysm. I'm not sure about the root, but I think as part of a valve sparing operation the root goes too.


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[valdab]

Hi Tdot
I was going to weigh in a couple of days ago and mention our similarities, but I thought I'd wait til after my routine (ha! not so routine this time) check up.

I'm now thinking more in depth about what lies ahead, and it occurs to me that as my valve is perfectly healthy, maybe they won't need to replace that. I'm sure I've read about the pros and cons of each, but I can't recall the details, so I await any further replies to your question with interest .

I'm so familiar with the panic attacks. In the 4 years since diagnosis, they taper off after my check up then reach a crescendo about two days before the next appointment. Right now they're about a 7 out of 10....

I hope you remain stable for many years - and you're absolutely right about statistics; I went to a Speed Awareness Course the other day and was horrified to learn that we have a 1% chance of being killed on the roads. It really is all about odds, and my husband being a professional gambler, I should be able to appreciate that more most!
kind regards

 

[pellicle]

Cardio exam went well until echo, that found the ascending aortic aneurysm. I'm not sure about the root, but I think as part of a valve sparing operation the root goes too

That's how they did mine.

Look at it this way, if the aorta ruptures then you are essentially dead in minutes, with the surgery there is pain for a week, hassle for six months and then probably at least another 10 years.

Its often throught that the extra life is worth it.

I'll let you know how that goes for me.

 

[themalteser]

That's how they did mine.

Look at it this way, if the aorta ruptures then you are essentially dead in minutes, with the surgery there is pain for a week, hassle for six months and then probably at least another 10 years.

Its often throught that the extra life is worth it.

I'll let you know how that goes for me.

Hi, sorry, but for the sake of my sanity, can you please clarify what you mean by...."probably at least another 10 years" is it life expectancy or Change of aorta again? The reason I'm asking is firstly because I have this annoying thing inside my brain named anxiety, but the other reasons are that, if it is life expectancy, than I thought that after such surgery, the expectancy is that of a normal person, and if it is about changing the aorta, I thought that the graft will last (out live) the person.

Thankyou.

 

[ski girl]

I don't want to speak for pellicle, but in case he's asleep and you're wide awake and freaking out about this 'ten years' thing - I imagine he's referring to the time a tissue valve lasts. Either that, or pulling a number out of the air to compare with the seconds you will have to live if the aorta ruptures.

I've never heard of an aorta repair only lasting 10 years.

Tell the anxiety to just shoosh already, eat well, sleep well, take care of yourself, and let your medical team work their magic!

 

[Rachel]

I just wanted to agree with Ski Girl - I don't think Pellicle was referring to the aorta or a person's life span.

I've had my aorta repaired and my valve replaced. I know that I've got a time limit on my tissue valve (as in it could last 10-20 years - or less) but no time expiration on the aorta.

As for my life span....well that's always been in God's hands

Rachel

 

[pellicle]

Good morning

Hi, sorry, but for the sake of my sanity, can you please clarify what you mean by...."probably at least another 10 years" is it life expectancy or Change of aorta again?

sorry about the brief post. I was making assumptions that (as you mentioned) they would replace the valve when doing the aorta. That is what they did with me (replace my valve when fixing an aorta).

My reference to the 10 years and the words probably were to emphasize that there are no certainties. Even though a mechanical will probably last longer than you ever need it for (perhaps by as much as 20 years past your expected life span) there are other factors which can happen and I prefer to deal with them up front rather than have the shock of dealing with them later when not expected.

Nothing in life is certain. For instance my wife suddenly died in August of a brain tumor noone knew about ... this is not me being bleak this is just my experience that certainty is taught to us implicitly but in reality nothing is certain.

The reason I'm asking is firstly because I have this annoying thing inside my brain named anxiety,

yes, anxiety is annoying. I am not sure if you mean the mild version we all have, or the clinical stuff (as I have friends on medication for just that).

I'm not sure what is the best way to deal with introducing these things to you no matter which type you are meaning.

I have always been a plain truth sort of fellow.

I had my first OHS when I was about 11 and my second at 28 or so ... the operations are quite well done these days compared to the earlier times, so I'm sure you will have a relatively straight forward one.

but the other reasons are that, if it is life expectancy, than I thought that after such surgery, the expectancy is that of a normal person, and if it is about changing the aorta, I thought that the graft will last (out live) the person.

well the graft probably will, but there have been some cases (a recent one here if I recall rightly) where there are complications. That is not to say this implies you will have any complications.

The life expectancy is likely to be that of a normal person. But there are other factors. My view is that take each day as a gift and live each day as if you may not get more. Do not give up planning for the future, as its likely that it will occur.

I kissed my wife and told her I loved her when she left to go to Finland to visit her family on a holiday. She told me she loved me and she'd be back soon.

I never saw her alive again or spoke with her again. Imagine if I'd had some silly grudge or argument before that?

There are enough demons to bring you down in life as it is, so its best to not over analyise the "what if" of your surgery.

It was only recently in human history where you would simply be dead. Now they can save your life.

My last reference in my initial post to you was this:

Its often throught that the extra life is worth it.

I'll let you know how that goes for me.

That was a reference to my current situation. I posted something about that on my blog here:
http://cjeastwd.blogspot.com.au/2012/11/i-wish-i-was-dead-but-im-not.html

Soon enough I was back in Hospital with a post surgical complication from the surgery that was nearly a year gone by
http://cjeastwd.blogspot.com.au/2012/11/another-surgery.html

I didn't die then (although I did wish for it) and remain here making the most of my life.

Like I said earlier, I'll let you know how that goes for me