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krnewton84, October 1,  2020  12:17am EST

Bicuspid Valve/Aortic Stenosis

Hey! I'm brand new to this forum, and I was so happy to find it because I've been pouring over the internet for weeks, trying to find similarities to my situation. I'm 36 years old, and have two kiddos. I was born with aortic bicuspid valve although it never gave me any issues. A few months ago I had a trans ischemic attack, which was pretty scary. There was a suspicion it may have been related to my heart, and after a bubble echo was done, I was diagnosed with moderate/severe aortic stenosis. I meet with the cardiologist in 2 weeks to talk about options. I have been short on breath, extremely tired, my oxygen saturation is low (I have a pulse oximeter at home), and I feel like I'm going to faint at least once a day. I felt so ****** for the last few months I actually thought I may have had COVID, but I got a test and antibody test just to rule it out and nothing. I guess my biggest concern is, should I get a second, third opinion? Are the bigger hospitals or cardiology centers really that much better in terms of outcomes? Has anyone had severe aortic stenosis with symptoms and not had to have surgery? I'm a bit paranoid because my aunt had this disease, had a valve replacement at my age, and then died about 10 years later.
3 Replies
  • AHAASAKatie
    AHAASAKatie, October 5,  2020  9:09am EST

    Good morning, I think a second opinion is always a good idea. If for no other reason than to bring you peace of mind. I can share this article with you, Aortic Valve Stenosis. It does touch on your condition and may be helpful.   In terms of evaluating hospitals, I can share this link about the different certifications hospitals can apply for and how to find the ones in your area that MAY specialize in treating your condition.

     The American Heart Association with the Joint Commission collaborate to provide hospitals Acute Stroke Ready Certification, Primary Stroke Certification, Thrombectomy-Capable Stroke Certification, and Comprehensive Stroke Certification to qualifying hospitals. The collaboration has recently been expanded to provide cardiac certifications including Comprehensive Cardiac Center Certification, Advanced Certification for Heart Failure, Acute Heart Attack Ready Certification, and Primary Heart Attack Center Certification. 

    AHA also provides Hypertension Center Certifications for physician practices and has recently expanded its portfolio to offer certification programs for Post-Acute Care facilities. The use of the Heart-Check mark for certification programs allow providers to communicate their recognition by the American Heart Association to patients and caregivers.

    Please let me know if this is helpful at all. Best Katie

  • tomohm
    tomohm, October 8,  2020  2:06pm EST

    Hello krnewton84...  I'm kinda new here myself and last year I was diagnosed with a aortic bicuspid valve and an ascending aneurysm.  I was 52 when my primary doctor happened by chance to find my bicuspid valve during a pyhsical.  He sent me to a cardiologist.  The cardiologist had me perform all kinds of tests and that's when they also discovered the aneurysm.  Once the aneurysm was found, the cardiologist recommend a cardio surgeon that I should see.  I made an appointed to meet with that surgeon and on my own I made arrangments to see another cardio surgeon at another hospital as well.  They were both from very good hospitals and they were both respected chief heart surgeons of their repsective hospital and they both told me exactly the same thing... that I would going to require surgrey.  But in my case, it's the aneurysm that's forcing the surgrey to happen now rather than later.  Both told me they won't know what to do about the valve (repair, replace, or nothing) until basically the day before the surgrey to remove the aneurysm.  In any case, I felt much at ease myself speaking with both doctors and hearing idential information.  And both told me that the risk of fatility is very low.  I looked into both surgeons and both have very good morality rates.  Survival rate was over 99%...  The difficult part for me afterwards was choosing which surgeon to go with.  I'm scheduled for this surgery in 31 days from now and I really don't have much fear of dying from it.  More like dread of having to deal with the post-surgery and healing process.   I understand your concerns but yes, I think a second opinoin does did for my mental state.  As I understand, Cleveland Clinc is rated #1 in heart surgey in the US.   I've seen on their website they offer a 2nd opion service where you send them all your medical detail and they will setup a virtual meeting with you to review your options.  I myself did not go this route as I'm fortunate to live close to some very good hospitals.  Though you should know that this service that Cleveland Clinc offers is NOT covered by your insurance.  You have to pay for it... I believe its between $500 and $1000... but I bet other good hospitals also have this same service and might be cheaper as well.    It's just an alternative that I consdered myself but going directly to the hospital for consultation, that was covered by my insurance.   

  • Catness1709
    Catness1709, October 19,  2020  8:28pm EST 36 yr old son just found out the exact same thing....same is Monday and he has an appt with his cardio Dr.  on Friday.......I m a wreck.....Friday can t come fast enough.  He too was born with this and we never knew until a few weeks ago.  Hope all goes well with you sweetly....keep us posted!

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