Anonymous
Post 02/12/2018 12:20     Subject: Dealing with a scary illness at a young age
I think therapy would be good here as well OP. I know you are scared. But this isn't really a life ending diagnosis at all. I was diagnosed with a chronic and advancing conditioner 29. Of course I was scared. But I've chosen to keep living my life. You can't let a condition define you.
Anonymous
Post 02/12/2018 08:44     Subject: Re:Dealing with a scary illness at a young age
Had you had rheumatic or scarlet fever in childhood or adulthood?
When untreated they can cause mitral valve prolaps and further complications.
It is best diagnosed (especially if it's a prior and not acute infection) via this lab test:

https://labtestsonline.org/tests/anti-dnase-b
Anonymous
Post 02/12/2018 07:11     Subject: Re:Dealing with a scary illness at a young age
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:My brother was diagnosed with Bicuspid Aortic Valve Disease at age 30. He did not survive. He passed away a week after the diagnosis. That was almost 14 years ago. It could be worse. You are still alive. He left three little children who have had such a hard time dealing with his death, and a family that was torn apart. Life is short, and you do not know how much time you have. Live every day like it was your last. We are still grieving, and the hole in our hearts will never go away.


Are you serious? That is the most unproductive thing you could say to OP.


+1 I’m sorry about your brother but seriously? What’s wrong with you? You’re scaring the shit out of OP.


Well, it’s just as valid a viewpoint as the one where the woman who had hers replaced twice tells her not to worry about anything and that she’s being annoying in bringing it up even. She has a right to explore her fears.
OP I would make sure to use a very good surgeon - one who works at a good, large hospital (Hopkins? Inova Fairfax?) and who has done your particular surgery many times. An inexperienced surgeon doesn’t have to learn on you- choose wisely.
Using a good surgeon might help allay some of your fears.
Anonymous
Post 02/12/2018 07:05     Subject: Re:Dealing with a scary illness at a young age
Anonymous wrote:I had the same thing happen, but at about 12 years old.

You posted a different thread about this recently, yes? As I said then, my valve has been replaced twice (in my 40s now), and I have a totally normal life, other than yearly cardiac checkups. Most people who develop this, even young, have very few problems.

If it is weighing this much on your mind -- and I say this gently -- you should sit down with your cardiologist and discuss prognosis, and maybe consider therapy. It is never completely going to go away, and there is absolutely no reason it should dominate your life.

Heart stuff is hard, though. Believe, me, I get it.


Can you play sports with your new valve? How about child birth?
Anonymous
Post 02/12/2018 04:56     Subject: Re:Dealing with a scary illness at a young age
Anonymous wrote:
Anonymous wrote:My brother was diagnosed with Bicuspid Aortic Valve Disease at age 30. He did not survive. He passed away a week after the diagnosis. That was almost 14 years ago. It could be worse. You are still alive. He left three little children who have had such a hard time dealing with his death, and a family that was torn apart. Life is short, and you do not know how much time you have. Live every day like it was your last. We are still grieving, and the hole in our hearts will never go away.


Are you serious? That is the most unproductive thing you could say to OP.


+1 I’m sorry about your bomrtoher but seriously? What’s wrong with you? You’re scaring the shit out of OP.
Anonymous
Post 02/11/2018 13:26     Subject: Re:Dealing with a scary illness at a young age
Go Volunteer at your local PICU or pediatric oncology ward to gain some perspective on your situation? It seems you have a good prognosis and manageable condition, so count your blessings.