18 and scared.

[Mom2izzy]

18 and scared.

I found out my valve was leaking at age 7 and had surgery at age 40. Most surgeons now would recommend the surgery sooner.

Although no heart surgery is trivial, valve repairs and replacements really have become routine for many of our surgeons.

Hang in there!

 

[JoeP]

So I had my appointment. Got pretty much the 2nd best news I could hope for (first being a misdiagnosis).

I didn't have to do any tests at all and he told me I had very trivial leaking with the valve opening completely normal. He said on a scale of 1-6 (6 being the worst) I was at a 0.5 and if I ever need anything done it will be when i'm 40-60 which he went on to say they will probably be doing the replacements through the groin by then. He said I don't even have a murmur right now.

Another thing he told me is that I don't need antibiotics for going to the dentist... he said something about having it proven not needed anymore. Anyone hear anything about that?

I still have to go in for yearly check ups but I have no restrictions regarding activity/ diet. But I know I should still take care of myself now.

The best thing he told me though was that if I ever need the surgery I will still have a normal life expectancy afterwards

 

[Oilman]

JoeP,

That's great news, just like many above had mentioned. Not to worry. So now you can go on living life without that fear today. I'm happy the doctor gave you some reassurance. Enjoy the things you love and achieve all your dreams. Take care of yourself.

 

[Superman]

The best thing he told me though was that if I ever need the surgery I will still have a normal life expectancy afterwards

I've always joked that my mechanical valve has a lifetime guarantee. As soon as it fails, the guarantee is up!

But seriously, that's great news for you. It might still take a while to get used to the idea, but it won't be long that the only time you'll really think about it is when you get that reminder call for your annual check up.

 

[nngbwh]

Great news ! See ya back here in 40-60 yrs :biggrin2:

 

[ramjet]

Good news, similar to the news I had, except they said on a scale of 1 to 10 (1 being a trivial murmer and 10 needing surgery right now, I was a 1)...and I stayed a 1 for many many years, and then a 2 and then a 4 and then surgery at 50 years of age...but we are all different.

BTW the evidence regarding the need for antibiotics fior patients with heart valve disorders does ebb and flow over the years,,,,"yes, take antibiotics"..."no, why are you taking antibiotics"..."sorry, you'll have to come back tomorrow to have that tooth filled because you didn't take antibiotics"....oh brother, try and get some doctors and dentists to agree on anything sometimes is a pain...Its a bit differnt now that I have a new valve, the "risk vs benefit" profile is very much in favour of having antibiotic cover...ie I absolutely don't want to get a heart infection if I can avoid it...I just do what my cardiac surgeon says now...and I take antibiotic cover before any procedure that involves my blood being spilt.... butr just do what your doctor says until they actually need to do something about your valve (if ever)....best wishes and stay fit....remember, if they need to operate on your heart, it is much better if your coronary arteries are clear and tyour heart is fit and your lungs are healthy....so stay fit, don't smoke, watch your cholesterol....and keep your checkups and, above all, enjoy life ....have fun

 

[Mom2izzy]

18 and scared.

My dentist and cardiologist had also told me that antibiotics for dental work was no longer needed...pre surgery. Post-surgery, I'm getting a different story.

 

[epstns]

Joe - That's about the best you could hope for. You know you have this condition and can monitor it over time. For now, though, it is not going to affect your life. I started out that way, and didn't need surgery until I was over 60. There's lots of time for everything, so enjoy it but keep an eye on it.

As for the antibiotics, the newest research is showing that they are not needed. Many docs have immediately begun following that guidance. Some of us prefer to err on the side of caution, so we still pre-medicate. At this point, I see it as a personal choice.

 

[Tiger]

Wonderful news Joe!!! Happy for you!

For the dental antibiotics I was told about 10 years ago that they weren't needed anymore and I haven't used them since. Planning to ask my new cardio. For his opinion when I see him though.

 

[Rachel]

GREAT news Joe!!!!

About the dentist and antibiotics, listen to what your doctor says (your cardiologist) and if it makes you feel any better at all, for 45 years I didn't know that I was born with a bicuspid and I've had all kinds of dental procedures done to me prior to surgery without the antibiotics including gum surgery.....

Rachel

 

[JoeP]

Thanks everyone.
I'm still probably going to need my wisdom teeth pulled so i'll see what the dentist says and ask my doctors again. Taking them precautionary won't hurt.

Anyway, 30 years is a long ways away. I'll stay healthy and active in the mean time and hope that the replacement through the groin is the norm by then.

 

[Superbob]

Just saw your post -- I was told in my 20s that I had a leaky valve; I had surgery to replace it, as well as an enlarged aortic root, when I was 63. In the meantime, I played industrial league softball and ran marathons; since the surgery I have walked parts of the Appalachian Trail. So relax -- you will have a great life. Enjoy.

 

[Candee]

You're going to be okay! I had valve repair & a valve replaced when I was 17, & it will be 26 years in August. I really don't remember much except my incision hurting when my brother would make me laugh. Recently the doctor said I have to have this valve replaced again and now I'm scared but I got through it last time & then it was basically new surgery and a mechanical valve worked well for me. He doesn't know when I'll have it replaced but sometime in the future since I'm not showing any symtoms.

 

[JoeP]

Thanks again guys.

Still thinking about this everyday and having lingering pains/aches. I was wondering if you guys could tell me from experience just what exactly the symptoms feel like.

I have been having all different kinds of back aches all over my back that come and go, vertigo, headaches and an annoying chest pain that feels like someone is grinding their knuckles on my sternum. Would my cardiologist be able to see anything serious on the echo (the only test I received) that would be causing these?-like heart failure.
I told him about the chest pains.

They have been getting less gradual daily. Could it be from anxiety? I never have any breathing trouble and the pains aren't accompanied by anything. And would it even be possible for a trivial leak to be causing all of this?

 

[tom in MO]

Yes it could be from anxiety. When I was finally told I needed surgery, I got stomach problems and my cardiologist said it was anxiety. Wouldn't you know, when I picked a surgeon and set the date, my stomach problems went away.

Rest easy, you don't even have a murmur. I had a murmur since birth and it took 54 years until I needed a replacement valve. You'd be in your 70s if you're like me.