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.

Op here. This is exactly what I fear

It sounds like it came straight out of OP's current thinking, so yeah, whomever posted it, I agree its unproductive.

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.

Which, to be very clear, is not the same situation as OP is in. Sorry for your loss. Your brother must have been at critical stenosis when diagnosed, and so his prognosis was very, very,very different from OP, and it was an extremely rare outcome after first diagnosis.

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.

I had a pretty serious issue develop in my 20s that required major lung surgery and would have potentially been fatal but for the surgery. It was incredibly stressful at the time, and the stress of the problem coming back was almost like PTSD. I ultimately got therapy to deal with the health anxiety. While my health issue felt “special,” in reality it wasn’t because a lot of people have to deal with bullshit health problems when they’re young that can come back. I learned to distract myself (with anything- online shopping, binge watching a tv show, etc) when I felt anxious and that helped a lot. I also learned that I’m that person who needs to make appts with doctors as soon as a symptom arises- and that’s fine bc it eases my anxiety. Good luck OP- you won’t find the answer on the internet so stop searching, and try to distract yourself with something else and talk to a doctor about your concerns.

Anonymous wrote:

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.

What is your prognosis?

I am so terrified and keep getting panic attacks

Again, my prognosis is a pretty much normal life. I've said this three times, and I'm smiling when I say it this time. I expect to live as long as my parents, into my 80s or 90s. I did ballet at university, go hiking in the mountains, and have no problems with my early morning jogs. I have sex about 4-5 times a week and in adventurous positions.

I do have yearly cardiac visits. Not every other year in my case, because I progressed quicker than most.

Honestly -- stop posting on DCUM. It's working you up even more each time. Talk to your cardiologist. Believe them, or get a second opinion (which will almost certainly be the same, so you can believe both of them). Last time I linked you the prognosis for this diagnosis from the American Heart Association. Like I said, it's a pretty normal life. That isn't going to change because of your feelings about it. Your feelings need to be addressed as their own issue.

And consider therapy. That's not dismissive. It's a kind voice from an older gal who been there, done that.

I had my aortic valve replaced early 40’s. It was a bit of a shock since I’ve always been thin with no health problems or family history but I recovered quickly and am doing fine. You might want to see a therapist for anxiety if this is weighing on you so heavily.

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.

What is your prognosis?

I am so terrified and keep getting panic attacks

We're lucky to live in an area with experts - see if you can be seen at NIH or Hopkins.

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.

Start researching and doing your own homework (2nd opinions, different philisophies on treatment options, prognosis, etc.).

Educating yourself with facts will help make the unknown not so fearful.

Your doc should refer to you a specialist. Go from there in terms of support groups, treatment options, and the like.

Yes find people who have been through it, so you can see past t. It really helps.

—diagnosed with cancer in 30s

Take one day at a time, find a support group and time will make it easier.

So I've been diagnosed with mildly calcified aortic valve and some mild leakage of that valve. I'm 30. The doctor has no idea why I have a slightly calcified aortic valve at such a young age as this is usually what happens to 60+ people.

Either way here I am just starting my life and dealing with serious heart issues. How do I cope? I'm a mess