My BAV :)

[uneeck]

First of all I want to say HELLO to ALL members!

My name is Thomas and I'm from Poland (I hope you will understad what I'm writing ). I was diagnosed with BAV in 2012 with ECHO, because my doc heard a murmur (I remember she told me that I have a little murmur couple years ago).

My first ECHO results were (2012):

Aorta - 3.1cm
LV - 5.8cm
EF - 68%
max gr - 18 mmHg

In 2014:

Aorta - 3.5cm
LV - 6.0cm
EF - 66%
max gr - 26.1 mmHg

In 2015:


Aorta - 3.4cm
LV - 5.7cm
EF - 60%
max gr - 26 mmHg



In 2016 (made 29th Dec, so pretty fresh, PLEASE COMPARE THEM TO OLD ONES):


Aortic annulus- 2.9cm
Aorta - 3.3cm
LV - 5.1cm
EF - 69%
max gr - 24 mmHg

So the last ECHO showed, that my heart actaully is much better, than it was a year or 2 years ago. Pretty weird What do you think about that? I can also say, that I do not have any of bad symtoms. I am in pretty good shape I'd say. I was really shocked in 2012 when after my 1st ECHO I was told about my BAV. Then I was like listenning to my heart all time after that till today. The only symptom is that I am sometimes (actually when it is bed time) feel my heart beating (and it is really annoyning sometimes) and did not had that feeling before diagnose

So on the last ECHO doc said he can't tell me when I would have to go for surgery, maybe in 1 year or it could be good for next 20 years as well actually.

 

[Paleowoman]

Hi Thomas - welcome to the forum ! We are a pretty international lot ! I am from the UK.

It's not unusual for the echo to vary from year to year, partly because that's the nature of echocardiograms and partly due to the technician doing them. Did you have the same technician and machine each time ? A mxaimum, or rather peak, pressure gradient of 24 mmHg and one of 26 mmHg is really no different and your gradient seems quite stable - not that I'm a doctor !

I'm surprised your cardiologist said you could have surgery in 1 year - something quite extraordinary would have to happen and probably not related to your pressure gradient ! Regardless, the time for surgery is very difficult to forecast with BAV. Some peope go years and years without surgery. The murmur from my BAV was first heard when I was 25 - I don't know what the pressure gradient was then. I wasn't followed much by cardiologists except when I was 35 and had my son, but I have no record of the pressure gradient. Then nothing until I was 53 - then the peak pressure gradient had reached 35 mmHg. I then had yearly echos and the peak pressure gradient rose steadily by about 3 mmHg per year until I was 60 when it shot up by 14 mmHg in one year and reached 68 mmHg. At that point I was referred for surgery. I never had any symptoms at all in all the time before surgery, even the day before surgery I was fit, did a long walk and did some weight lifting !

As long as your cardiologist is keeping an eye on you, you'll be fine. And keep healthy and fit yourself which will help your heart.

 

[uneeck]

Hello Paleowoman! Thank you for your response.

I did my echo on the same machine each time, but different technicans. A year ago I cardiologist, who made me ECHO said just: everything is pretty stable, and yes you have BAV, it looks like fish mouth (she smiled), so see you in the next year.

The last one was made by different doc, who said, that I need to make next ECHO in half year. And he can't say if I would need to have my valve replaced next year or in next 20 years.. So he wasn't pleasant at all

 

[ZechariahLi]

Hey uneeck, when I was in university I had a friend who was from Poland, we lived in the same apartment for 6 months had he wore a pair of prada shoes, very funny guy! Welcome to the forum and hi, I'm a Chinese guy grew up in Singapore.

I was just diagnosed of BAV in Dec 2016, fell into anxiety and am still trying to recover, had symptoms of light-headedness, numb toes and cold feet since the diagnosis. I think partly because my cardiologist told me I had severe Aortic regurgitation, and might need a surgery in a year's time. That's kinda hard to accept given I have been living 28 years prior without knowing it.

Well back to your Case, I have a neighbour who is 50 this year, he get to know his leaky valve 3 years ago and has been on a 6 monthly echo schemem. he does have varying scans as well, sometimes the heart is scanned to be smaller. His cardiologist says it's almost impossible for the heart to become smaller, and the minuate discrepancy can be contributed to equipment inaccuracy and the technician who does it. Hope you stay in good shape and do not need the surgery for years to come, meanwhile take care and keep fit!

 

[uneeck]

Hello ZechariahLi and welcome to BAV family

I forgot to say - I am 29. So pretty same age as you. My scans can vary, because I am very stressed during ECHO (I think, because of thinking about bad results) my hearts is beating like crazy with hig BP for sure I can't keep calm even if Im trying

 

[pellicle]

Hi from across the Baltic lake (Finland)

First of all I want to say HELLO to ALL members!
So on the last ECHO doc said he can't tell me when I would have to go for surgery, maybe in 1 year or it could be good for next 20 years as well actually.

I don't know much about the measurements so I didn't comment earlier, but I can say that its all likely to be good outcomes.

For instance when / if you need surgery its all doable, I had my first surgery at about 10 (to split the cusp), another at 28 (to replace the repair with a homograft) and then my last OHS at 48 to insert a mechanical and fix an anerysm. I've had a pretty good time throughout 99% of my life (with respect to my heart) and have pretty much done as I wish.

I'm just back from an hour and a half of cross country skiing on the local tracks here in Finland (Joensuu to be specific). I'm an Australian and have managed to live in a number of countries as well as travel a lot too ... so no matter what it feels like, focus on the future and not the obstacles ;-)

Best Wishes

 

[uneeck]

Hello pellicle and thank you very much for your response

This is what I want to read from you guys. That you are now "fixed", so that means you are able to live a normal life, sometimes even better, just because you have a respect to your life and you are looking at your life from different angle (I think so)

Also want to share a video of polish guy, who had his BAV replaced with mechanical valve: https://www.youtube.com/watch?v=76kp1aaxYl0&t=520s

He says he now lives on higher level, than before he even knew about his disorder. Thats really motivating

Thank you and I wish you all best!

 

[pellicle]

Thank you and I wish you all best!

and to you my friend

 

[honeybunny]

Deleted. Sent private message instead.

 

[Agian]

Also want to share a video of polish guy, who had his BAV replaced with mechanical valve: https://www.youtube.com/watch?v=76kp1aaxYl0&t=520s

He says he now lives on higher level, than before he even knew about his disorder. Thats really motivating

Thank you and I wish you all best!

Great vid. Catchy tune. Lock up your daughters.
But seriously, you don't need to thrash your upper body to put on muscle.
Orange shorts guy needs to watch his technique.

 

[uneeck]

Great vid. Catchy tune. Lock up your daughters.
But seriously, you don't need to thrash your upper body to put on muscle.
Orange shorts guy needs to watch his technique.

Haha, yeah orange shorts guy needs to watch him for sure. And you can see: oragne shorts guy (probably healthy guy) VS guy after open heart surgery with AVR

 

[Superman]

uneeck, welcome to the forum. I don't know a lot about specific measurements, but yours do appear fairly stable and within, what I would guess, is a reasonable margin of error. Have you seen the fuzzy images on an echo? They are marking their best guess of limits and one tech might choose a slightly different angle, all of which can account for variations in measurement.

In terms of reassurance, I've had two open hearts, one when I was 17 for the valve, the other when I was 36 for an aortic aneurysm. Outside of that - I have two jobs, an amazing wife, five great kids, and busy all the time. I go in for checkups periodically, and try to stay healthy.

Sounds like cardio #2 just doesn't want anyone shocked if things don't go well, so they discuss all potential outcomes. It seems like they are covering their bases so no patient can come back and say they weren't warned. This works well for some patients, but others don't like unnecessary worry. You need to find the cardio that works best for you.

 

[ZechariahLi]

Hello ZechariahLi and welcome to BAV family

I forgot to say - I am 29. So pretty same age as you. My scans can vary, because I am very stressed during ECHO (I think, because of thinking about bad results) my hearts is beating like crazy with hig BP for sure I can't keep calm even if Im trying

Well, I will be 29 end of the year! Similiar here, I guess I would have problems staying calm for my next echo too! 
I just checked out my measurements, ours are very similiar, mine:

EF: 66%
LVIDD: 4.8 cm 
LVIDS: 3.5 cm 

However my pressure half time was kinda not so good, 304 ms. Did you have the pressure half time measured? 

 

[ZechariahLi]

Great vid. Catchy tune. Lock up your daughters.
But seriously, you don't need to thrash your upper body to put on muscle.
Orange shorts guy needs to watch his technique.

Hahaha! This guys is amazing... such build after OHS... I was hitting thr gym daily before my diagnosis. Now I stopped those weights and HIITs, changed to Leisure cycling. Hoping to avoid the intense exercises and stress to the heart, hopefully delay the surgery in anyway... what exercises you guys recommend for people in the waiting room? It's better to avoid the heavy weights right? 

 

[ZechariahLi]

Hi from across the Baltic lake (Finland)



I don't know much about the measurements so I didn't comment earlier, but I can say that its all likely to be good outcomes.

For instance when / if you need surgery its all doable, I had my first surgery at about 10 (to split the cusp), another at 28 (to replace the repair with a homograft) and then my last OHS at 48 to insert a mechanical and fix an anerysm. I've had a pretty good time throughout 99% of my life (with respect to my heart) and have pretty much done as I wish.

I'm just back from an hour and a half of cross country skiing on the local tracks here in Finland (Joensuu to be specific). I'm an Australian and have managed to live in a number of countries as well as travel a lot too ... so no matter what it feels like, focus on the future and not the obstacles ;-)

Best Wishes

Hi pellicle! That's really inspiring! I gotta be honest, the thought of the OHS is terrifying... visualising table, knives, cold dark nights in icu, all the tubes and unable to speak... thank you guys who got it fixed and are here to support us... 

I think the fear for me is quite personal, I'm an engineer and studied aerospace, I always thought of what if this and what if that.. Guess the prof sank Murphy deep enough to our minds. I really admire those who are fearless, I spoke with friends and they know the stats, they are like come on, theres nth to be afraid of... :x the positivity from you guys definitely helped!! Keep rocking and best wishes! 

 

[ZechariahLi]

Sounds like cardio #2 just doesn't want anyone shocked if things don't go well, so they discuss all potential outcomes. It seems like they are covering their bases so no patient can come back and say they weren't warned. This works well for some patients, but others don't like unnecessary worry. You need to find the cardio that works best for you.

Well, I guess my cardio is similiar to uneeck's cardio #2, covering his and my bases... 

Blessed to have an amazing wife, I know exactly how that feels!! Pray for your health and best wishes to the family!!! 

 

[Agian]

Hahaha! This guys is amazing... such build after OHS... I was hitting thr gym daily before my diagnosis. Now I stopped those weights and HIITs, changed to Leisure cycling. Hoping to avoid the intense exercises and stress to the heart, hopefully delay the surgery in anyway... what exercises you guys recommend for people in the waiting room? It's better to avoid the heavy weights right?Â*

I wouldn't attempt any of that for at least a year after the operation. Don't forget Arnie needed to have a repeat operation, after going overboard post-op.

i had a similar build when I was his age, and I certainly didn't lift very heavy. You've got to understand that every time you lift something really heavy your blood pressure spikes. Swinging from bars like that can't be too good for your shoulders, either.

Having said that, he is inspirational.

Zach, I've got to tell you, we middle aged guys are a generation of losers compared to the generation before us.
I also take my hat off to you young people So mature and stoic. It's actually moving.

 

[epstns]

Hey - Agian - I always defined "middle age" as my mother's age. She died at age 81, and I haven't caught up yet, so I guess I'm still looking forward to my own middle age (I'm "only" 69 now.)

Wasn't Arnie a juicer in his competitive days? That could have had some impact on his build.

I never lifted heavy, but did do sets of bench presses lifting my own body weight for quite a few years. I'm a smaller guy, so never built massive muscles, but I was able to develop pretty good definition. Now, all these years later, it is a struggle to maintain any of it. Zech - if you are in The Waiting Room, you might consider going to lower weight, higher reps until you know more specific to your situation. That's what my cardio recommended to me in the 5 or 6 years leading up to my valve surgery. I still do that today, and at least I can say that I'm still in better shape than almost all of the guys my age at my gym. Of course, exercising 5 days a week couldn't have had anything to do with it, could it?

 

[Nocturne]

Yeah, Arnie has admitted that he juiced. I had not known that he needed a second surgery though. Did they replace his tissue valve with a mechanical, or is he still walking around with the same tissue valve 20 years later? His original surgery was 20 years ago.

 

[Paleowoman]

I was hitting thr gym daily before my diagnosis. Now I stopped those weights and HIITs, changed to Leisure cycling. Hoping to avoid the intense exercises and stress to the heart, hopefully delay the surgery in anyway... what exercises you guys recommend for people in the waiting room? It's better to avoid the heavy weights right?Â*

It’s very important to keep healthy and fit. Weight lifting is very good cardiac exercise unless your cardiologist told you to restrict heavy lifting. Although I’m (only) a woman and was 60 when I had surgery, I carried on lifting heavy weights right up until before heart surgery - for example, I was doing leg press of 150 kilos (330 pounds) using a hammer strength machine - that is over three times my body weight. I was using a super slow HIT technique and breathing freely throughout so as not to put a strain where none should be.I was lifting to my maximum always, but using good form and always breathing freely/panting almost throughout. When I had the echo prior to surgery, the technician asked me if I did weight lifting as he could see how strong my heart was. So keep fit and take advice from your cardiologist - if he says don't lift heavy weights, don't lift them, if he says no restrictions then go for it !