17 Year Old - Will this change my life?

[GlassOcean1]

17 - Male

I recently discovered that I have a BAV through an echo,
I Don't know the exact details from the MRI yet, but nothing was flagged up.

I already had my que to get my life together and change, I had started progressive calisthenics and doing moderate weights to put on some mass
to my 6 ' 3 150lbs body - im not kidding, im now around 167 lbs but still have a long way to go before I have an exeptable level of musculature.

Life was good, then I found out about the BAV.
Im have two main questions here:

1.
Will I be able to continue getting into shape with out my heart f*ing ruptureing?
Resistance exersice has been the single biggest factor in beating deppression and feeling both more healthy and more confident.

I don't plan on being a power lifter (don't have the genetics anyway) but if someone needs help moving a peice of furniture or lifting some heavy boxes out of a van, I need to do that
My workouts consist of moderate weights (Upped the rep count to no less than 10) and I really enjoy progressive calisthenics - Pullups have done wonders for both hypertrophy, strength and fixing an upper back issue I had.
summary - If I can do pullups, dips, pushups ect.and help people move furniture im happy.

2.
If I need surgury will this (post op) mean previous question changes
+ idea of blood thinners scares the living s~%* out of me - will i be dependant on them,
have to keep checking, not be able to ski or go on holiday any more,
will i have a load of other new possible complications to stress me out,
Im over 6 ' 3 and dispraxic, I have no coordination and on daily basis bump into walls, lamp shades or any other thing that happens to be at around head hight,
It wouldn't be a case of if, but when do I bump my head on something and get a bleed.
summary - Im happy If blood thinners don't make me extremely 'breakable' and don't limit me from skiing or having a flexible life.



Maybe im stupid, but im currently less afraid of dying than of living a half life, Its just like some one has put a weak link in the chain and gone:
"What, you thought living a healthy life, going to the gym, eating properly and doing something productive would mean you could be worry free and not have a painful horrific death or be limmited for life?,
hangone a minuit there, let me put a stop to that, ok there we go you have a messed up heart, enjoy!"

I am aware that there are many here with FAR worse situations than me, however that just makes me feel worse because Im A: hopeing that they can be fixed and B: know I might become one of them

 

[Paleowoman]

Hi - welcome to the forum. I can tell you are in a panic ! Which is actually understandble. You need to get more information from a cardiologist about your BAV. People are born with BAV and some need their valve replaced when they are kids, some in their 20's, 30's, 40's, others in their 50's and 60's and some never need their BAV replaced. Arnold Snwarzenegger had BAV and carried on lifting pre and post valve replacement. My BAV was first heard when I was 25 but I didn't need it replacing until I was 60 - I carried on working out (weight lifting) right up until the day before surgery - it was never "half a life" ! Anxiety yes, that is only to be expected, after all we need a heart that is working properly !

When are you seeing a cardiologist ? That is your next step to fnding out more ! But certainly things like ski-ing, sports are all possible pre and post surgery even if you are on blood thinners, no worries.

 

[GlassOcean1]

Hi - welcome to the forum. I can tell you are in a panic ! Which is actually understandble. You need to get more information from a cardiologist about your BAV. People are born with BAV and some need their valve replaced when they are kids, some in their 20's, 30's, 40's, others in their 50's and 60's and some never need their BAV replaced. Arnold Snwarzenegger had BAV and carried on lifting pre and post valve replacement. My BAV was first heard when I was 25 but I didn't need it replacing until I was 60 - I carried on working out (weight lifting) right up until the day before surgery - it was never "half a life" ! Anxiety yes, that is only to be expected, after all we need a heart that is working properly !

When are you seeing a cardiologist ? That is your next step to fnding out more ! But certainly things like ski-ing, sports are all possible pre and post surgery even if you are on blood thinners, no worries.

Thanks for your reply, Iv got a little while until my next appointment with my cardiologist, although he seemed extremely chilled about it, he had a vary different response to a lot of people, his was :
"No change to lifestyle, if it turns out you have Marfans (Very unlikly as I have built some muscle - im pretty sure that is impossible with marfans) you would not be allowed to lift so heavy that you couldn't breath through it" - this is different to the contradictary and arbitrary numbers I see so often on the internet like 20lbs or 50lbs which for me I might as well be disabled - im pretty sure my college bag is that heavy.

 

[Superman]

I had my valve replaced when I was 17. I knew about it my whole life though and was on physical restrictions as a kid.

Having the surgery was a liberating experience in my case. I was able to start running, did some lifting, got in the best shape of my life. That isn't saying a lot, but for me it was good. I was 6' 4" and about 190 when I went in for surgery. Dropped to 170 after, but put it back on fairly quickly went I felt well enough to eat normally.

I've been on "blood thinners" since that time. Over 26 years now. Married, kids, jobs, I used to go mountain biking, skiing, you name it - all while taking warfarin. Family life has put more of a damper on my physical activities than medication ever did.

No half life needed. You'll be okay. Just see what your cardiologist has to say. If, for some reason, you just aren't connecting with that individual, don't be afraid to seek a second opinion.

 

[Nocturne]

It sounds like you have BAV but not aortic stenosis -- yet. Not good, but not terrible.

As I understand it, about half of people with BAV never develop aortic stenosis.

Obviously, you need to keep yourself healthy. Sounds like you are doing that.

If I were you, I would get my Lp(a) tested, as there is growing evidence that Lp(a) level is a significant factor in the development of AVS. If yours is too high, don't panic! There are antisense drugs in the works, undergoing clinical trials as you read this, that can lower Lp(a) by 90% or more!

In a way I envy you. You are young and you *know* you have a problem. My AVS is in large part due to a hidden genetic factor that I did not find out about until after I learned I had AVS, at the age of 42, when it was too late to do anything to avoid it. Had I known there was a high risk, I could have taken steps to protect myself, and made better choices. Might have at least slowed things down to the point where these new treatments they are talking about could have slowed things down even more. Too late for me now on that count.

What I'm saying is that learning you have BAV must seem like a slap in the face, but looked at from the right perspective, it's -- well, not a gift, exactly, but an advantage that not everyone gets.

Best of luck!

 

[pellicle]

It sounds like you have BAV but not aortic stenosis -- yet. Not good, but not terrible.
...
What I'm saying is that learning you have BAV must seem like a slap in the face, but looked at from the right perspective, it's -- well, not a gift, exactly, but an advantage that not everyone gets.

Best of luck!

Very well said

100%

 

[dick0236]

Hi Glassocean1. I found out about my heart murmur when I was in my teens. Back then there was no way to stop the heart in order to fix it. At age 31 I had my open heart surgery and the bad valve was replaced with a mechanical one. It will soon be 50 years with that valve and it has interfered little with my life. Now 81+, I still live a normal life....golf a couple times per week, gym workouts a couple times per week, etc. The "blood thinner thin" is a nuisance sometimes.....but is very important. My only Cardinal rule is "take my warfarin as prescribed and test routinely"......and live my life.

FWIW, as you research BAV you will find that many live a long time before surgery is required......some never require surgery. Monitor your condition, live your life and when the time comes for a fix, as the Cable Guy says, ........"git 'er done".

 

[pellicle]

Hi

17 - Male

I recently discovered that I have a BAV through an echo,
...
Will I be able to continue getting into shape with out my heart f*ing ruptureing?
...

My view is that its the challenges that shape us into who we are, not the good times, sunny days and "everything goes our way" s

I was diagnosed at 5, had my first OHS at 10, second at 28 and third (and fuckenhope last) at 48

Each time left me in need of recovery of my physical strength and fitness. The biggest challenge was at 28 where regaining fitness was harder because I'd fallen so far. But that taught me lessons too. It taught me how much I valued my health, how much I valued fitness, independence and strength. So when I was called upon again to do it at 48 (oddly I had not been expecting it) I had the experience to know that determination pays off.

I think that's already true of you.

Being one who had to struggle as a teen ager to get strength lost by not being a run-around kid in my pre-teens had me develop habits that my friends and family didn't. Accordingly by the time I was 40 I was in better shape than they were (in the main) and now in my 50's even more so. Healthy eating, a sensible approach to booze and a wish to be active have all helped.

The issues you have as questions all boil down to fear of the unknown. I can say that you don't need to fear that as myself I'm on warfarin now (last valve was a mechanical) and it has represented almost no change in my lifestyle. The change then? Take that pill every day, test my blood coag levels every week, write it up and move on.

I wish I could somehow instill some confidence that all that faces you you will be able to conquer. But like everything else in life getting it yourself is what actually is the builder of confidence.

Life is full of challenges, its knowing how to face them and that you will be there on the other side of them that makes us strong (as humans). This is your first big challenge, but I'm sure that you'll emerge stronger for it.

Take a look at some of my posts (or at my blog) to see how I've managed to face challenges and how these principles have helped me to pull me through. I'll point you first at my blog post on managing warfarin (in case in some future time you're on it, as has been said you may not need surgery for some years, and how knows, by then there may be entirely different 3D printed technology available. My blog is here: https://cjeastwd.blogspot.com/2014/0...ng-my-inr.html From there you can find more.

Best Wishes

PS: I ski and I motorcycle (still)

 

[GlassOcean1]

Thanks for all the replies, you are all great people that the world needs more of, it means a lot to me!

 

[cldlhd]

Before you worry about "blood thinners" I would find out the condition of your valve. It might never need replacing or by the time it does it's POSSIBLE they may have a mechanical valve that doesn't require them. Or your valve could be repairable or be fine for life as is, you never know. The only thing I can see restricting your lifting weights would be if you have an aneurysm and if it reaches a certain size it can be replaced with a graft. Mine was replaced 2 years ago at the age of 45 and 3 months later I was given the no restrictions clearing.

 

[Nocturne]

Dick, I didn't realize you had had a birthday. Happy belated birthday!

 

[cldlhd]

Dick, I didn't realize you had had a birthday. Happy belated birthday!

here here!

 

[ClickityClack]

I've got BAV, must've had it all my life. But it got me through most of my 5 years in the Marine Corps without me knowing it was there. Now, at 38, I'm having surgery for an aneurysm (and replacing the valve at the same time) but the valve still isn't bad enough to require surgery on it's own. One of my relatives has BAV, received an aortic graft for an aneurysm in his 50s and his valve is still serving him well 13 years later.

Find out the status of your valve and aorta and go from there. Keep those follow-up echo appointments and live a normal life until Doc says you can't. We're fine - you will be too.

 

[Agian]

You're the same age as my son
I'll write more when I get back from work.

 

[cldlhd]

I've got BAV, must've had it all my life. But it got me through most of my 5 years in the Marine Corp without me knowing it was there. Now, at 38, I'm having surgery for an aneurysm (and replacing the valve at the same time) but the valve still isn't bad enough to require surgery on it's own. One of my relatives has BAV, received an aortic graft for an aneurysm in his 50s and his valve is still serving him well 13 years later.

Find out the status of your valve and aorta and go from there. Keep those follow-up echo appointments and live a normal life until Doc says you can't. We're fine - you will be too.

So you're replacing the valve preemptively? Is it showing signs it's deteriorating? When I had my aneurysm replaced 2 years ago I thought about having my bav replaced with a mechanical​ but my surgeon was totally against it as I had no stenosis and only trace leakage so I had the valve repaired.

 

[ZechariahLi]

Hey mann.. When I first joined this forum, I thought I was the youngest here. Nope I was damn wrong. I was diagnosed in Dec 2016, I was 28, I get to know it because I was buying insurance but the Dr heard a murmur. And suddenly I have BAV and severe regurgitation. What the f right? That's how I felt, I had no symptoms no family history and suddenly a pop up message and everything changed... 

When you mentioned blood thinners, skiing, and weight lifting I first thought about all the wonderful people here, who have already responded... so as I wait for my turn for surgery (which I hope to delay if God allow it), I'm gonna take their words. They had been there done that and lived a wonderful life. 

Nocturne has a great point too, you r young and you know it early. If I knew my BAV when I was 17 I wouldn't lived my life the same way, I'd sleep early, rest well, eat well and keep in damn good shape. But life takes its course, If I knew it back then I wouldn't have worked so hard and be so passionate about having a family. 

So, you have BAV, that's not a real problem, as long as it did not leak really bad, like mine, your heart functions normal and you have no symptoms, you might never needed the replacement. Good luck and you will be in my prayers! Strict around and be a support to others, who might be in the same situation, encourage and pray for each other. It's after knowing my condition I took some time to slow down and appreciate life. 

 

[epstns]

I'll agree with Nocturne - In knowing that you have a BAV, you have the luxury of knowledge. You can keep an eye on it, and if it never gets bad enough to require surgery, it will be just another periodic check-up to do. If it does progress to the point where intervention is warranted, you will have plenty of notice, and you will be able to plan your course with plenty of good information.

I didn't find out about my "probable" BAV until I was 52 years old. By then I had completed college (and wrestled), 7 years in the military, built and drove race cars, traveled, married, raised a family, lifted weights, ran/jogged. . . did just about everything I wanted to do, just like any other guy 10 years younger than I was. For the first couple of months after my diagnosis, I was in a sort of super-funk. Then I found this site and met the folks here. They helped me to see that my life was not ending, it was merely changing. I, too, was in the "watch and wait" status with my valve, and remained so for almost 11 years. During those years, I learned to just get on with my life. For most of that time, I felt absolutely no symptoms or "illness." Unless I chose to tell someone of my situation, they had no way to know. I did sort of slow down during the final year before my surgery, but that was my only symptom. As I told my cardio, I was ". . . tired of being tired."

I had my valve replace, finally, at age 63 - 6 years ago. I slowed down for a little while, but by the first anniversary of the surgery, I was pretty much back to where I started, or maybe even better. Now, in spite of nearing 70 years of age, I continue to live my life just as most of my 50-something colleagues wish they could. I'm still working 50+ hours a week, going to the gym, traveling, whatever. You get the picture - Life is Good!

Have faith! You already know you have a condition that will need to be watched. Not many more surprises after that. Stay on top of your doctor visits and follow instructions (as long as they make sense. Don't let them treat you as if you were 80 years old when you're not.), but by all means live your life. This is not a death sentence. It is a LIFE sentence. You will need to monitor it for life, but you will have your life to live.

 

[ClickityClack]

So you're replacing the valve preemptively? Is it showing signs it's deteriorating? When I had my aneurysm replaced 2 years ago I thought about having my bav replaced with a mechanical​ but my surgeon was totally against it as I had no stenosis and only trace leakage so I had the valve repaired.

Currently my aortic valve has moderate regurgitation and mild to moderate stenosis. The surgeon's exact words were, "we'll already be in there, we won't leave you with a leaky valve." He offered me the possibility of repair but wasn't terribly optimistic about the odds for success and, assuming success, informed me that the repair probably wouldn't outlast a bioprothesis. I chose mechanical so that maybe I won't have to get another OHS.

Bottom line, the valve wasn't too bad yet but it was just a matter of time.

 

[Nocturne]

You're the same age as my son
I'll write more when I get back from work.

I have a son his age, too...

 

[cldlhd]

Currently my aortic valve has moderate regurgitation and mild to moderate stenosis. The surgeon's exact words were, "we'll already be in there, we won't leave you with a leaky valve." He offered me the possibility of repair but wasn't terribly optimistic about the odds for success and, assuming success, informed me that the repair probably wouldn't outlast a bioprothesis. I chose mechanical so that maybe I won't have to get another OHS.

Bottom line, the valve wasn't too bad yet but it was just a matter of time.

Makes sense to me, Fwiw, I was going to go mechanical if my valve "couldn't take a stitch" . I didn't have any stenosis and trace regurgitation so it was repaired. My surgeon is also big on repair so that probably influenced the decision a bit.