Mended Hearts Open Forum

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  • 1.  Hello

    Posted 04-25-2019 09:19
    It seems I never introduced myself. My name is Charles and I am a congenital heart defect survivor. I say survivor because in the last 15 years I have had to come face to face with my heart defects. I am 43 years old and 15 years ago I was diagnosed with a bicuspid aortic valve. Shortly afterwards I had a pig valve placed in my heart. Followed by a stroke at 29 and then a pericardial window done at 30. A year later I was informed that I had a pfo that was overlooked during first surgery. After that it was a couple rounds of endocarditis and then they found the cardiac sarcoidosis. This past August my valve reached the end of its life and I had a tavr valve done along with closing the pfo, aortic root, aortic arch and then removing part of my left atrium due to extensive scarring from previous surgery. Due to a genetic anomaly, I could not be placed on coumadin since my body did not break it down correctly. 6 days after the valve surgery, I was home and on my way to recovery. I was rushed back into the hospital with a BP 60/40. I had developed what is called a tamponade along with cardiogenic shock.  7hrs later I was back on track to recovering. Now, 8 months later and I'm not 100% yet but I am alive and that is good enough for me. My Dr suggested me joining this group so that I could hear others battles along the way as well as share my experience dealing with this. I have struggled, I still struggle with the tamponade surgery, due to my BP being so low, I was opened up while awake to relieve the pressure around my heart. I still hear that wonder nurse, holding my hand telling me that everything would be ok, all awhile I hear the wires being cut holding my sternum together. Drs say I have PTSD due to this, I dont know if i do or if i dont. I just know every night while I'm laying there listening to my heart beat in my ears, I fall asleep and I hear the sounds of the surgery again, over and over. Usually I wake up in tears and then I ask myself, why ... why did this happen to me, what did I do for this karma to come my way. Why cant I just be happy and appreciate the fact that I survived this when as we all know, alot of people aren't as lucky? I am hopefully that as I read others stories that I will appreciate the gift that was given to me, or at least maybe my story will help another realize that as cardiac patients we have all fought and good fight and won.

    Prior Lake MN

  • 2.  RE: Hello

    Posted 04-25-2019 14:22
    Hi Charles,

    Thank you for sharing your story. My son was born with a congenital heart defect and had open heart surgery at 11 weeks. He is 10 now and does have a bicuspid aortic valve and some other issues that will need to be corrected in the future. I, as a parent can not feel the same experiences, but I can tell you that I know for a fact that lots of heart patients (and family members) struggle with PTSD. I myself have struggled and while I have found ways through it, the fear sometimes creeps up when I least expect it.
    I can only imagine going through such a traumatic experience would leave you with those feelings. You are not alone on this journey.
    I have found that connecting with others and talking through the feelings helps a lot. I commend you for sharing and starting the conversation. I also think that you can both be appreciative and still struggle. I don't think that having fears or reliving things makes you not appreciate your life. I find myself some days being angry or upset about our situation. It's not fair that my son has to go through the things he does. However, that doesn't mean that I am not blessed and appreciate the life he has and the fact that I still have him here with me.
    I hope others chime in who may be experiencing these thoughts from a patient perspective. But, from a mom....I can say I feel you!

    Andrea Baer
    Grapeville PA
    (724) 396-7820

  • 3.  RE: Hello

    Posted 04-26-2019 10:27
    Hi Charles,
         My name is Ken and I am an adult survivor of three open heart surgeries for aortic stenosis.
    PTSD , in my personal opinion, is probably a "given" after any heart related surgery. I suffered with it after 1976, my last surgery, so it was 40 years of suffering.
          About 4 months ago I felt that my heart was a ticking time bomb, and I literally could not get away from it.
    PTSD, depression, anxiety finally took its toll. I was absolutely miserable for a week.
          Finally I entered a three-month program for trauma treatment, a very intense 6-hour a day therapy group for other people with various traumas, and, I don't know how it happened, but today, I feel brand new.
          I accepted what I have, made peace with my heart and body, and now have a therapist to work with.
          Charles, I believe that heart surgery is a life changing event. Therapy to me should be included in the process
    of cardiac care. I would highly recommend it.
    Stay well,my friend. This site is heaven-sent!


    ken levine
    volunteer, retired
    Middlebury, Vermont
    United States of America

  • 4.  RE: Hello

    Posted 04-26-2019 09:25
    hello, just want to see if this gets through.
    Ken Levine

  • 5.  RE: Hello

    Posted 04-26-2019 10:11
    ​Thank you for your story, Charles. I think anyone who reads it will be impressed by your courage and attitude. Winners in a good fight, is a nice way to phrase it. Believe there are better days ahead and uncountable moments of good feelings.

    Bob] Levin
    Berkeley CA

  • 6.  RE: Hello

    Posted 04-26-2019 11:05



    I read your history with interest.  My past is much simpler, A-Fib for going on to twenty years now, and 4X CABG four years ago, at age 72.  I have laid in bed listening to my heart many a night, and it is unnerving. But I had a great example of life from my Mother.  She had colon cancer in her early nineties that completely blocked her colon.  They said she would not survive an operation to remove the cancer, so they gave Mom an ostomy bag and put her radiation and a low level oral chemo drug.  Mom taught long ago me that life is not fair, it just is what it is.  Do what you have to do and move on.  Her philosophy of life was very simple, "This is the cross the Good Lord gave me, He'll help me carry it".  Mom lived alone, in her own home, and was 100 when she passed away.


    Because I had A-Fib for so long, I was seeing a cardiologist regularly, and during one of my visits, he asked me to take a stress test.  While I was on the treadmill, I "crashed", quite literally.  My BP dropped into the 50-60 range and I was out.  I woke up on a gurney.  That lead to further tests and they found I had four arteries that were 90+% blocked.  The surgeon told me that I needed a quadruple bypass and suggested they schedule it for "tomorrow".  Bang, no time to think, just whatever Your plan is Lord, here I am!  The operation was successful and life goes on.  I realize now that I was a walking heart attack waiting to happen but they found it in time because I had the A-Fib, a silver lining to every cloud.


    It has been four years, and I still have A-Fib, but I have no physical restrictions, just listen to my own body.  I exercise regularly, do my own yard work, and my wife watches my diet for me.  I am a MH visitor, do volunteer work at the US Air Force Museum, and do volunteer work with both the Knights of Columbus and the Boy Scouts.  Life is good and I thank the Lord everyday that I am still going strong.  Life has no guarantees, so enjoy it while you can, and keep the faith.  I hope your recovery is as successful as mine was.


    Ray Steck

    VP, Chapter #61, MH

    Dayton Ohio

  • 7.  RE: Hello

    Posted 04-28-2019 14:24
    Hey Charles just want to make sure my next note will go through

  • 8.  RE: Hello

    Posted 04-28-2019 14:59
    OKay, Hi Charles,
       I too am a survivor of three open heart surgeries for an aortic stenosis. I developed it at two months old. My surgeries were in 1968, 1972, and again in 1976. In '72. In that open heart I received a prosthetic aortic valve, but 4 years later it was found that the valve "model "  was defective, so I was sent back to surgery like a Ford Pinto in '76. (sorry for the italics but I don't know how to turn it off.)
         Back then, there was really no language to identify PTSD, Panic disorder, etc. I am now 62, but for 40 years I was depressed, had 3 emotional breakdowns, and even suicidal  thoughts. DONT WORRY, my survivor story has a good ending. I was diagnosed as having anxiety, and was given zanax like candy. 
        So my point is that after 40 years I entered a program for people suffering trauma; spousal abuse, physical and sexual abuse, etc. I was in this program for three months where I learned that OF COURSE my anxiety, depressions, panic attacks were all about the trauma that happened after all 3 life-changing events.
       This happened only four months ago. I was in the program from the end of October to January 5th of this year.
        There was one week when I was totally scared of my valve, my body; I felt like a ticking time bomb.But then I was able to learn about trusting my body and the valve, and learned to ACCEPT  that this is what I have, I can't change, but I can go on living a full and active life.

        Today I feel like a new life has opened up for me. Deep breathing, centering myself and going forward just seems like a much better life.
        I never ever thought I would come this far at all, but somehow, something clicked in my brain.
          Your descriptions are very much like mine, Charles, and I am glad you are on this site. 
          Heart surgery IS a life changing event, and yes, depression, anger "why me" and anxiety is not abnormal.
         The need for patients to receive therapeutic care cannot be understated. Friends and relatives help, yet the need is for YOUR emotional needs. I am an advocate for taking care of your emotional brain, to help your brain figure out "What Happened?"
    I truly hopes this helps you and others. We are not alone.
    In Peace,
    Ken Levine
    Middlebury, Vermont.

    On Sun, Apr 28, 2019 at 2:23 PM Ken Levine <> wrote:
    Hey Charles just want to make sure my next note will go through