fraley
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fraley, July 15,  2019  2:33am EST

BAV, still in diagnostics, emotional rollercoaster

Hello all.  I've recently been diagnosed with a bicuspid aortic valve congenital defect.   I had been having angina (stable) for 4 months, then suddenly had an incident of unstable angina at work that dropped me to the floor and I experienced my first ambulance ride.   I'm 53 years old, single, and live alone.  I am only a slight bit overweight (like 15 pounds) and I eat a mostly vegetarian diet. I live far from my cardiologist, and getting diagnostic tests has been a scheduling issue.   5 months into this (9 months since the onset of pain), and I still have angina in spite of medications (which have been helpful for many things, such as fibrillation), but my diagnostics are not done.  My next scheduled test is the 24th of July (10 days away) for esophogial ultrasound.

In the interim, I'm scared.   Part of me has accepted that I could die at any moment--another part latches onto that fear.   Each time I have an unstable angina incident (intense, stabbing pain) accompanied with dizziness and weakness, I find that I start worrying that tommorow will not come--but it does (so far).   I just found the resources here at AHA to help deal with some of the emotional turmoil and stress reduction.   I still do not know what is causing the pain, and researching BAV is what shook my world; that knowledge that I might have a catastrophic rip occur in my aorta is always there.

How do I discuss these issues with friends and not leave them with a sense of doom that feeds depression in me and alienates people?   I'm thinking there is no way and I have to turn to a support network online.  How did you folks deal with all the emotional rollercoaster ride while in the middle of diagnostics, with only a little information that is just enough to scare one to the core?

And just a reminder, I'm atheist and I don't want to hear about religion, please.

Thanks for your time if you read this, and even more thanks if you respond.

Jerry

1 Reply
  • tarajb
    tarajb, August 7,  2019  9:40pm EST

    Hi Jerry,

     

    sorry to hear about what you are going through.  I just found out I have a BAV a few years ago.  After having three kids we figured it out, and I remember feeling pretty scared, too.  I think that what's kept me going is that I've made it this far with the BAV and nobody knowing, so now that people know (especially me), I can take some measures to take better care of myself.  Sounds like you are already doing a good job at that.  I did try my best to work out more and I do also eat healthy, and now that my youngest is 5, I've been experiencing worsening symptoms like chest pain and very high blood pressure that "breaks through" any medicine I'm given.  Turns out for me I also have a coarctated aorta, which is very rare, and now I need a stent put in.  The thing is, what I try to remember is, I trusted my gut, without getting into all the details, and just knew I needed to see someoe about the symptoms I have been having.  While trusting your gut is good, you also have to find a balance between knowing when there is an actual issue, and when it's something you know you just have to learn to live with.  whether an aethiest or having faith in God, Try to see every day as a true gift that you aren't ever gauranteed, as cliche as that sounds.  The days just keep rolling on in, and here we still are, so try to find solace in knowing you are deifnitely not alone in your feelings, and you can enjoy each day you are given.  You seem very aware of your health and it doesn't sound like you are going to curl up in a corner and let yourself fade away.  I'd say it's good to talk to your friends about how you are feeling and maybe welcome them to keep you company now and then and get your mind off ot it.  I remember when I lived alone, I definitely had way more time to overthink!  Best of luck!    TJ

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