Mar 21
Standleej
Standleej , Posted on SUPPORT NETWORK Blog

Fear of Sudden Death or how do I prepare myself for the worst scenario.

BAV. Genetic condition, born with two flaps in aortic valve, instead of a normal peace sign. OK. What does that mean at fort-nine (first experience with a cardiologist). No much. I was diagnosed with mitral-valve prolapse, after echo cardiagram. Move forward to 2009 and close to retirement from AT&T Mobility. Chest pains, emergency room, tests and echo. Don't worry about Mitral Valve Prolapse, you have A bicuspid aortic valve. Little did I know that my life at changed. Every six months to a cardiologist and once a year an echo. Little said by cardiologist about the aortic aneurism, or else I didn't fully understand. My cardiologist said aneurysm was slow process enlarging and wouldn't need to worry about till mid 70's. something happened and it enlarged quicker than anticipated. 4.3 cm and they won't go in with heart surgery, till 5.5 CM. Hope It doesn't dissect before then. That's where the anxiety kicks in. 
  • ANNET
    ANNET,
    Have you asked the Dr why are they waiting for that magic number of 5.5 cm.. Especially since it enlarged so quickly. How often are you tested? Hopefully on a regular basis - not every 6 months. Do you feel that you should get a 2nd opinion?
  • mingo1
    mingo1,
    I have lived since 1993 from a massive heart attack and eventual ICD implant the same year. My ejection fraction is only 28%. However, I am still going strong and do most everything. I have had a long run and so will you. Second opinion is always best. Stay busy and know that you have lived a long time with heart problems. Even though my beat up heart has had some tough times, I am here and love life. LIVE STRONG.
  • AHAASAKatie
    AHAASAKatie,
    Thank you so much for sharing your story with us! Since you mentioned not getting much information about the aortic aneurysm, I want to share this link for patient education. http://www.heart.org/HEARTORG/Conditions/VascularHealth/AorticAneurysm/What-is-an-Aneurysm_UCM_454435_Article.jsp#.WNKHZ2_yvIU Please let me know if this information is helpful for you. Best Katie
  • ActiveLarry
    ActiveLarry,
    Annet asks a very good question. Meanwhile, more thiamine in your diet may improve stem cell performance to maintain artery walls, and look up foods that boost nitric oxide, so the arteries may be more flexible, not brittle. Light exercise at least will stimulate myokine production that heals inflammation.
  • ActiveLarry
    ActiveLarry,
    If you have a positive attitude, then believe in yourself, learn all you can from reliable sources about your health issues, and be one who recovers. Being sad and depressed shuts down part of the bodies defenses. Live as if it matters. We hope it does.
  • yrrab446
    yrrab446,
    You will be fine. Follow your doctor's instructions and keep your blood pressure under control. I dissected and had two emergency open heart surgeries and survived at 50. I am now 1.5 years out. I am doing great. The fact that you know about it makes your life IMMINENTLY BETTER. Now you can watch for signs of change and get ready to have surgery if you need it. I only wish I had had that chance. You're going to be fine. Listen to your thoracic surgeon and keep the blood pressure nice and low. Good luck and just know you're not alone.
  • pamswimmer1001
    pamswimmer1001,
    A second opinion, as ANNET suggested, might not be a bad idea. As my cardiology surgeon said to me after my double by-pass surgery, "Good Luck!". That was in 2011, and so far so good!
  • InUiLive12
    InUiLive12,
    Pray and ask Jesus to come into your heart and life and make you knew in him and read the book of Acts to start with if you can. God will answer when you call. Hope this helps in answer to your question. He loves you more than you know and he knew you before you were even born the bible says and he formed you in your mother. If you ask and seek you will be found of Him and he will bear witness by His Spirit that you have passed from death unto life whether you go on with medical intervention or whether you should go on from this life to His loving arms into heaven you will have his assurance that you are now a new creature in Christ Jesus, as the scriptures teach and His Holy Spirit will witness to your heart and soul that you are saved in Him. There is nothing greater in life than knowing this for yourself on the inside and having His peace. Will be praying for you. God Bless.
  • Gaby
    Gaby,
    Dear friend, I was with 35 and low blood pressure. Everything under control. This magic number 5.5/6.0 cm was used before. Now with BAV with 5.0 cm American cardiac surgeons adopted the surgery. With me I had several opinions before go through a intervention. But the aneurysm didn't wait for the surgeons time and cabalistic number. If you are 5.0 with BAV you don't need to wait more. You can choose and it's your right to decide for a surgery because you meet the criteria. Believe that is better to program an intervention then wait for a dissection. Check articles about this theme in most specialized hospitals for this case. Read my story and feel free to take your time scheduled. Everything will go fine with you. let's avoid dissection. Be confident and forget about fear of death, this is definitely out of this game. Keep positive thoughts. Preventing dissection is the main focus. Try visiting others surgeons. I lost part of my family waiting for this "number" because they were afraid to do the surgery before.
  • Gaby
    Gaby,
    Dear friend, I was with 35 and low blood pressure. Everything under control. This magic number 5.5/6.0 cm was used before. Now with BAV with 5.0 cm American cardiac surgeons adopted the surgery. With me I had several opinions before go through a intervention. But the aneurysm didn't wait for the surgeons time and cabalistic number. If you are 5.0 with BAV you don't need to wait more. You can choose and it's your right to decide for a surgery because you meet the criteria. Believe that is better to program an intervention then wait for a dissection. Check articles about this theme in most specialized hospitals for this case. Read my story and feel free to take your time scheduled. Everything will go fine with you. let's avoid dissection. Be confident and forget about fear of death, this is definitely out of this game. Keep positive thoughts. Preventing dissection is the main focus. Try visiting others surgeons. I lost part of my family waiting for this "number" because they were afraid to do the surgery before.
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