(Closed) Anyone with a congenital heart defect? Scared :(

posted 6 years ago in Wellness
Post # 4
Member
1765 posts
Buzzing bee
  • Wedding: September 2012

I have a friend who found out she had something wrong with her heart in a similar way you did. I’m not sure specifically what it is, but I know that she was told to keep up with her normal activities (she’s a runner). It was something she had since birth but they only found it when she was older. I would just do the MRI or whatever tests they want to run, so you’re sure what’s wrong. I’m sure one of the reasons you’re feeling so upset is all the uncertainty about it. I can totally understand how you’re feeling though! Within a couple months of my wedding, my doctor was running tests for a disease that would forever change my life… it turned out I was fine, but emotionally it was so hard to have something wrong and not know exactly what it is. Hope that helped at least a little! Hope you find out what’s going on!

Post # 5
Member
3424 posts
Sugar bee
  • Wedding: June 2013

@Loupyloo:  I have a mitral valve prolapse . didn’t know I had it until after I had my daughter 17 yrs ago. I was applying for a mortgage and all of a sudden my heart started beating out of control . SCARY! I had numerous tests and ultimately had an ultrasound and sure enough there it was.

 I have to avoid drinking  too much caffeine but other than that I don’t take meds and it’s not debilitating.  my doctor said I can continue to exercise i.e. run, cardio, weights etc. I do notice during that time of the month it acts up but I think knowing that I’m not going to drop dead from it eases my mind.  maybe once you you get a definite diagnosis and gather more info about what’s going on with your heart you’ll be able to relax and stop worrying.  I wish you well girl!! if I can help or if you need to talk I’m here for you:)

Post # 6
Member
1311 posts
Bumble bee
  • Wedding: October 2013

I’m not sure what you are having but my Fiance (38) had a minor heart attack (at least that’s what he thought he had) 10 years ago.

Turned out he had a bulging aeorta and was taking daily medication which would slow down his heart rate. The “heart attack” was a small tear that was happening.

He would have annual exams to see how things are going and after few years of living like that he recieved a phone call that it was time to have surgery as soon as possible.

He needed to have his aeorta and valve replaced. They used a mechanical valve and now he is on blood thinners for the rest of his life. It was scary and recovery took 3 months but it’s been 2 years now since and he is healthy, plays sports, does everything anyone else does….

He is blessed that he had that small tear that let the dctors discover the defect he had since birth…… some people just drop instantly without knowing…. look at some athletes.

If there is anything that you need to be worried about… don’t be. 

Post # 7
Member
1469 posts
Bumble bee
  • Wedding: September 2012

I have a congenital condition that causes my connective tissue to be weak. I was diagnosed when I was 14 and was told it’s possible I had to have heart surgery someday if my aorta stretched out too much (aneurysm). When I was 30 it happened. I had to replace my ascending aorta. I got to keep my valve. It was scary, but the risk of death was relatively low. My boyfriend and I were only together for 5 months when I found out I’d have to have surgery. He stuck around and was with me through everything. He won major brownie points with my family. We are married now and my health is great. I feel exactly as I did before the surgery (just fine!). 

I’m sure once they find out what is wrong they will know how to treat you. One thing I learned from my whole process though: be your own advocate! Don’t assume they are always up to speed with your tests and treatment. Things fall through the cracks sometimes. If something doesn’t seem right, press for answers.

Good luck!

Post # 8
Member
548 posts
Busy bee

@Lulume:  It sounds like he had an aortic dissection. I’m glad they were able to catch it and that he had a successful surgery. 

Does he have a connective tissue disorder?

Post # 10
Member
1311 posts
Bumble bee
  • Wedding: October 2013

@goodasitgets:  No, I don’t believe he does.

I am thankfull every day for them catching it when they did 🙂

Post # 11
Member
2905 posts
Sugar bee
  • Wedding: June 2013

I was born with ASD and had open heart surgery at four. I think it’s a pretty mild condition to begin with, and has very successful outcomes after surgery. I’ve never had any limits on activity and my cardiologist says I can get pregnant just fine. It would just make me technically “high risk” but plenty of people have healthy lives and pregnancies after ASD repair. 

Post # 12
Member
5660 posts
Bee Keeper
  • Wedding: August 2012

I am so sorry you found this out and that you are probably scared out of your mind! A friend of mine who is 27 went for a marathon training run in November with her father and a friend and went into cardiac arrest. They have no idea why to this day and she has had a really hard time adjusting to it. So while I don’t know how you feel, I empathize with what you’re going through.

At the same time, you can’t put your life on hold for this, especially without having any concrete news or information. If the doctors recommend you continue exercising and with your normal life and routine, then they feel confident that you can do so without injury. If it makes you feel better, maybe pull the spin instructor aside and tell her what’s going on, and that you’re nervous. It may put your mind at ease that you aren’t alone in the room with your secret. You can also get an ID bracelet or shoe id (roadid.com) for your tennis shoes. If you are struggling in class I am 99.999% sure it has NOTHING to do with your condition other than you knowing you have it, as you said. Don’t borrow trouble until you know what’s going on, continue to live your life and trust in your doctors that they know what is best for you! Also remember and know that millions of people live full complete lives with this kind of thing and don’t get it diagnosed until late in life, usually by accident.

Post # 13
Member
11747 posts
Sugar Beekeeper
  • Wedding: November 1999

I have a bicuspid aortic valve.  It doesn’t give me much trouble and doctor’s aren’t too concerned about it now, but I’m always scared for the future and what coul dhappen.  My DR told me to come back in 10 years or when I get pregnant – so it jus tmakes me nervous that it might interfere with pregnancy or something. 

Definitely get a good cardiologist and dont’ be afraid to ask questions and get second opinions!

Post # 14
Member
548 posts
Busy bee

@Loupyloo:  OP, I don’t have experience with ASD, but I do have heart issues in the family (valve problems and also aortic aneurysms) and my boyfriend has a couple of CHD’s. I’d really just tell you not to panic until you have more information (if they say they don’t know exactly what it is and they need to do more tests, then that’s exactly what they mean–don’t overthink it and don’t panic if you don’t have all the information), and follow your doctor’s advice. They wouldn’t tell you that you could do your normal activities and exercise if they didn’t think you could. If you have any concerns, please talk to your cardiologist, but realize that if they need to do further tests, they won’t necessarily be able to tell you much without more information.

As for heart defects in general, many people have them and are able to live close to normal lives. There are a lot of treatment options available, and it’s important to get proper and timely medical care if you need it.

The topic ‘Anyone with a congenital heart defect? Scared :(’ is closed to new replies.

Find Amazing Vendors