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Finfan, June 8,  2021  11:07am EST

Petrified Of Open Heart Surgery

I was diagnosed 4 years ago with a Bicuspid valve and aortic aneurysm and now they say the valve stenosis is very bad and time for surgery and I'm having terrible anxiety for I'm extremely claustrophobic and I'm terrified of waking up on the respirator! Praying that I survive all this! I'm 59 years old. The last cath I had in 2017 showed no other heart problems or disease so getting ready to have another praying it shows the same! I have started to have my feet swell in last couple of days? I'm going with the tissue valve as I don't want to be on blood thinners and could not take the clicking sound it makes. Was going to have a hospital bed delivered for few weeks so I can sleep? Any advice or help will be much appreciated? 
Thank you all in advance! 

5 Replies
  • Catie
    Catie, June 8,  2021  6:41pm EST

    Hi Debbie, 

    I was terrified both preparing for and undergoing surgery to replace my aortic valve and aortic root and to repair an aortic aneurysm. I was 57 and mine was done in late 2016. I had to choose tissue. Everyone is different, but I had no recall of being on the respirator. I had a few complications but the surgery was successful. After I got home, I slept on the reclining end of my sofa for weeks. Being able to easily tip back helped and my surgeon didn't want me on my side for six weeks.

    Someone I know who had a similar surgery obtained some medication to use as needed for anxiety and to help her sleep. Youtube has relaxation videos that might help or even doing things for self care like taking a warm bubble bath or listening to calming music might ease your mind. I kept reminding myself that my surgeon was extremely skilled and that he did these procedures every day.

    Wishing you the best in your journey and recovery!


  • AmbassadorDN
    AmbassadorDN, June 8,  2021  11:08pm EST

    Welcome, Debbie!

    Catie above has given you some good advice. 

    The AHA has great resources on preparing for heart surgery. Currently I'm on the family iPad and can't access links for you, but take advantage of some of the great articles and personal essays of those who have had heart valve surgery. Our AHA Heart Valve Ambassadors have experiences in heart valve surgery themselves, with each one unique and educational. You can read more as you browse the Support Network here.

    In my experience, I have had three heart valve surgeries since 2006 and woke up able to breathe on my own after each surgery. However, I had a complication the night of my third surgery and woke up on the ventilator, which I had for thre next twelve hours or so until my doctor determined I could breathe well on my own. I had been advised even before my first surgery to prepare to wake up "on the vent," so I knew what to expect. If this is the case for you, try to relax and breathe along with the ventilator.

    Heart surgery is a scary prospect, for sure. There is no way to sugarcoat it. Make sure you are as mentally, emotionally, and physically prepared as possible prior to surgery. Have items ready for you, such as a shower chair, extra pillows, a recliner, soft nightgowns or comfortable lounge wear, etc. as you recover at home to make your post-op recovery go as smoothly as possible. 

    Do address any concerns you have about your surgery with your care team: Your surgeon and/or cardiologist should help put your mind at ease about the surgery. Have a list of questions ready as you meet with your surgeon. Although surgery does not seem definite for you quite yet, it's always a good idea to be prepared and have those questions ready so that you feel relaxed and empowered going in for your valve replacement when it is indeed time.

    Feel free to keep us posted, updated, and ask any other questions you may have moving forward.

    To Heart and Soul Health,

    Ambassador DN

  • Finfan
    Finfan, June 9,  2021  10:23pm EST

    I want to thank you all for your replies and the advise and help! It means so much more than I can say! I'm learning things from each one of you that no doubt will be of help to me. My Cardiac Cath will be on Tuesday and I'm praying that there are no new problems the last one in 2017 when they found the aneurysm showed no other heart disease or blockages. If this one is the same then it will be replace the Bicuspid valve with the tissue valve and remove the aneurysm. The massive claustrophobia really makes it that much more scary for me so they have put me on aniexty meds to keep my blood pressure down. My last echo was very bad they said the stenosis was at the point for surgery and they want to do it soon, I have 2 amazing surgeons both highly qualified as matter of fact they use to work together for 20 years and now both head up the cardiac units at their hospitals my problem is I'm more comfortable with one over the other but not crazy about the hospital he's in, I love the other hospital it's awesome but just don't feel as comfortable with the Dr. I'm praying that God will give me clarity. 

    Thank You Again,


  • AmbassadorC
    AmbassadorC, June 10,  2021  5:22pm EST

    Hello Debbie, 

    Welcome to the Support Network!  You are among a community of heart warriors who will be your strength for the journey ahead.  We are happy you found us and have already recevied some great insight into other's journeys and encouragement. First, I would like to say that you are not alone.  WE are indeed the survivors who will help you along the way.  What you are feeling is completly normal in all that you are experiencing.  One thing that I can share from my journey from open heart surgery to repair a leaking mitral valve is that you must be your own advocate.  Do not be afraid to share your concerns and questions with your team.  Prior to heading into OHS, I had a list of questions that I asked my surgeon.  You must feel 1001% comfortable with your heart being in the hands of your team and hospital.  Confidence in your surgeon and cardiac team, will help you with the mentala prepardness that you need prior to entering into OHS.  I am happy to share these questions with you if you would like.  

    I also invite you to review, if you have not already, the resources that my fellow Ambassadors have pointed you to.  Knowledge is Power!  The more you know about your diagnosis, the more you will be resilient to recovery.  Acceptance is key to resilience.  I also invite you to read a list of tips and tricks that I assembled prior to my OHS in 2013, that I wish I would have known, from a females perspective.  While some things are a bit self explanatory, it helps to also helps to share with your caregiver.  Often times we are so focused on ourselves as patients, that caregivers can't understand what it's like for heart patients.  Wishing you the best of heart health in your upcoming journey.  

    Read My Journey: Operation Backward Blood Part 1 | Part 2 | Part 3

    Please feel free to reach out to us any time as we welcome you with heart!  You are not alone! 

    Ambassador C 

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