Questions, Bicuspid, Police job coming soon... etc.

[Rods]

Hi everyone!

I am a 30 years old and was diagnosed with BAV in childhood; I never was scared by my condition and lived a totally normal life. (( made all bad things a young can do as smoke, drink heavly, do sports intensivly and drink coca-cola a lotiff.)).

Now it has been a long time I dont do those things, and started to worry ((too much)) with my condition because was approved in a Police Job that probably starts is middle of 2015, wanna married and have children.

Well, here I go...

I have very mild regurgitation and also mild stenosis that sometimes change very few; and not necesseraly increase(maybe because echo measures differences)... the middle gradient is 11 to 16 ((all my life)) and the max peak from 16 to 28. Never changed from this sometimes increasing or decreasing, and the root aorta always 35m.m since my 20´s;

My questions::

1.There is no calcium in my valve, is there any chance this stenosis due to the opening "shape"? I was born with it. does it happend to someone too?
2.Is it "normal" the maximum gradient changes so much?Sometimes increasing and also decreasing?
3.what is an accetable maximum gradient for mild stenosis? I heard is 25... when goes 28, why they keep saying it´s mild stenosis?
4.is there chances that even with stenosis, now that I am in my 30´s.. go to surgery only in 10 years? or even more...((i need some time in police before surgery))


Thanks for the attention and sorry about the poor english. =D. I am from Brazil.

 

[cldlhd]

Well first of all your English is a lot better than my Portuguese. I don't claim to be an expert but I think the gradient can vary from test to test. The stenosis could be strictly from the shape of your valve if its been that way all of your life, as for predicting when / if you'll need surgery I don't think that would be easy to predict at this point.

 

[pellicle]

Hi

welcome and good to meet you.

Like you I was diagnosed early but unlike you needed a surgery when I was 9 or so with my next at 28. I think that's close to your situation.

Like you I also lived a pretty "normal" life between those two points and wasn't worried about my condition. I was more worried about being sent to the principles office (it was never my fault you understand).

My questions::

1.There is no calcium in my valve, is there any chance this stenosis due to the opening "shape"? I was born with it. does it happend to someone too?

certainly when I was 9 my valve was not calcified, but I was told at 28 when they took it out that it was badly calcified. I don't know enough to comment but I suspect that with some there is no calcification which is why some valves can be repaired and others not.

2.Is it "normal" the maximum gradient changes so much?Sometimes increasing and also decreasing?

what is normal is that everyone is different. The "normal" range of what can happen is wide enough that it requires guess work ... this guess work is done by those (surgeons and cardiologists) with enough experience to make their guesses more close to right.

3.what is an accetable maximum gradient for mild stenosis? I heard is 25... when goes 28, why they keep saying it´s mild stenosis?

I guess that because people have stenosis which is so high that there is only a 3mm opening ...

4.is there chances that even with stenosis, now that I am in my 30´s.. go to surgery only in 10 years? or even more...((i need some time in police before surgery))

there is, but things can change. You really NEED to get opinions from experts and follow their guidance for when is the next checkup.

trust me, you do NOT want to extend past when surgery is needed just because of other life goals. When surgeons say "its time" its because the risk of death of not having the surgery is higher than that of having the surgery. Surgeons are "risk averse" and that's good. Long term (perhaps permanent) damage can be done to your heart if you avoid surgery past the appropriate time ...

Life sometimes seems "unfair" ... but my view is that "fair" is only a human idea.

Anyway irrespective of employment goals you're in good hands these days and any proposed surgery will only make your life better.

Best Wishes

 

[tom in MO]

I don't know anything about your first questions, but concerning when you will need surgery, this is something you cannot predict since each case is different. Plus, my cardio and surgeon says that BAV goes along real stable for years, then starts to fail and then fails quicker and quicker. Since this is the pathway of the disease, it's hard to know where an individual sits on the path. For most of us it is an echo every year and then every 6 months and then surgery. If it helps, I found one paper from Italy (I think) where they looked at people who had died from BAV. The ages ranged from about 17 to 80 with the median age at about 55.

 

[Rods]

Thanks everyone!! =D
I am really happy by having your support and opinions...
Now mission accomplished and next year more check-ups.

Until there, any scientific news I receive I will collaborate to the forum.
There is a personal rule I made, I will stop reading bad things about it from now and live a good life, don´t leting this makes me really SAD.
if/when surgery times comes, instead of focus in bad things, it will be time for celebration... for happines and finally the day to say thanks I have this and we are born in XX and XXI century.

Don´t give up the dreams...
UFC in August will have a fight between Cigano against Stefen (( he has bicuspid aortic valve.))

And soon I am a police investigator.... (( if with mechanical valve, I hope to not receive a shot from bandits...jejeje))

 

[Rods]

For the forum::
soon I share with you a little research I did, probably a lot people know it, but I think there is no problem for who knows it.....
good things coming for aneurism fix without open chest surgery, a brazilian new valve, a swiss new valve from Lapeyre ((some of you already know it))...

 

[Agian]

good things coming for aneurism fix without open chest surgery, a brazilian new valve, a swiss new valve from Lapeyre ((some of you already know it))...

I'll be excited to read about these new developments. What's the Brazilian valve like and when is it coming out?

 

[Rods]

I'll be excited to read about these new developments. What's the Brazilian valve like and when is it coming out?

@Aneurism prevention

Hi agian... did you see this video?
https://www.ted.com/talks/tal_golesworthy_how_i_repaired_my_own_heart#t-266896

This guy made a preventive way to avoid aortic aneurism. Amazing... I wish the preventive medicine could be more present

@Brazil tissue Valve

Dr.Francisco Diniz is doing a new valve applying use of stem cell combined with descelularization that is making almost "native" valves for patients, unfortunately only 30 people I think had this bennefit..
But he sold his technich for this company

http://www.tissueregenix.com/what-we-do#heart-valves

 

[Agian]

Lots of developments Rods. You may not need an operation for many years, by which time these will probably be routine.

 

[Rods]

I have no words for your support.
I don´t see your faces, not even where you are. But your words gave me strenght.

Thanks God there still good people for support.

We all will win this...
the fear is harder than the surgery for sure.... after that.. probably it becames so easier..


I wanna share with you the 6 rules from Arnold....
I am a big fan of Him since TERMINATOR 2...... =D
A big inspiration....

https://www.youtube.com/watch?v=EyhOmBPtGNM



who did not see this video yet don´t know what is losing.
This is my inspiration for life....

thanks all of you, thanks Arnold...

let´s never be paralysed by fear...

 

[pellicle]

let´s never be paralysed by fear...

one of my mantras ... glad to see it shared here by another