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  • 1.  New member

    Posted 01-04-2020 14:16
    I'm new to mended hearts. I was diagnosed with ASD in April 2018. I had OHS July 12 2018. I was getting sick and one day I went to the UR and I was having a gullbladder attack. The night before my surgery I got a call cancelling gullbladder surgery because a doctor noticed a spot on my lungs that he wanted to have checked before they continue. That day they rushed me to get a CT scan. I got a call that day to tell me I had pulmonary hypertension. In a few days I was in having an ultrasound on my chest. I barely got home when I got a phone call telling me I had a hole in my heart the size of a dime. Because of the position of the hole I was referred to the Mayo clinic in Rochester MN. There I was told that my ASD is rare. 1% of ASD patients have my condition. The hole is in the bottom of the septic area. On the outside I felt strong and blessed that this was discovered and my life had been saved. On the inside I was devastated. Well with the grace of God I'm here. Recovery was the hardest thing I have been through. I was just starting to feel that kind of energy I've never felt before. It was amazing. Then I suddenly lost it. I was tired again and had no energy. I was scared and thought I was going to die. I got depressed even though I was on medication for depression and anxiety. The after effects of my heart repair is that my heart is still enlarged. My heart still beats fast. After months of more doctor appointments they found a kidney stone stuck inside my kidney. Now more surgery. I got a terrible infection from that and ended back in the hospital. Finally in August of 2019 I finally feel normal again. However I never got my energy back. I'm wondering if anyone suffers from survivors guilt? I've lost dear friends because of sudden massive heart attack and question why this wonderful person left this earth and not me? What do I have to offer that my friend had to leave us and I'm still hear. It's a weight I carry in my new healthy heart. Thank you for letting me share all this. I've been looking for a place to talk to other heart patients about this. God bless.

    ------------------------------
    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
    ------------------------------


  • 2.  RE: New member
    Best Answer

    Posted 01-05-2020 07:33
    Dear Carrie,

    Survivors guilt.  There is much to be learned, not only from the members of our group, but from combat veterans and survivors of the Nazi concentration camps, some of whom I have known personally and with whom I have had close relationships.  Based on their experiences and my own experience, I have found that the question "why did I survive when all those I loved died" can best be answered not by words but by acts.

    These acts generally involve telling your tale of survival to others, so that they may learn and benefit from it, or by telling the story of your friends or loved ones so that others may know of their heroism or their lives and that, but for their existence, you would not be here to tell the tale, preserve their memory for the world, and teach others what you learned from your experience.  My personal survival has been accompanied with a profound felling of gratitude for all who saved my life, and a profound sense of wanting to "give back" to others who walk the path I have walked, as well as to their caregivers and people generally, so that what I have experienced and learned may somehow enhance the human experience and our advancement as beings in this shared life on Earth.

    If you would like to continue this discussion, I would be more than happy to do so.

    All the best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 3.  RE: New member

    Posted 01-06-2020 12:21
    Ira,
    You ALWAYS have a great way with words. Thank you for being such an amazing support. I agree with all you have said.

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------



  • 4.  RE: New member

    Posted 01-06-2020 14:30
    Thank you, Andrea.  When I was young, I read Le Miserable by Victor Hugo and saw the Frederic March film version, in which the priest tells escaped convict Jean Valjean that "it is better to give than to receive."  The priest's words moved Valjean to change his life completely, but they also moved me.  I didn't realize their most profound effect, though, until I was recovering from my heart attack and especially my CABG surgery and its aftermath.  I now know that whatever we give to others, we also give to ourselves, and the love we give is the love we feel in return because we are all connected with one another.  It also is why I feel so connected with Mended Hearts because, whatever I am able to articulate in words, you demonstrate in action.

    All the best,

    Ira​

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 5.  RE: New member

    Posted 01-06-2020 17:51
    I'm super greatfull God opened doors for this to be discovered. Heart Disease and lung cancer runs in my family. We are so happy I wasn't suddenly taken away from my loved ones. I wouldn't be alive today if it wasn't discovered. I'm so blessed that I met the doctor who noticed the spot on a chest x-ray from the UR! I know God has a purpose and reason for writing this chapter in my story, but maybe that is where my confusion comes from. I don't want to let Him down. I love God and I love to serv Him. I don't know what I'm supposed to do with all this. Thank you for reaching out. Love it!

    ------------------------------
    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
    ------------------------------



  • 6.  RE: New member

    Posted 01-06-2020 18:02
    Carrie,
    I believe as a Christian, God does have a purpose for everything he allows us to go through. Yes, it was a blessing the spot on your chest x Ray was noticed, and that they can fix it.  I had found out back in 2018 that I had an aneurism on my ascending aorta that they noticed on a chest x ray. It was a cough that drew me in to get the x ray. The cough was not associated with the aneurism, but put there from God I believe as a way for me to know I had the condition, and that there is a way to fix it which is by open heart surgery. If there had been no cough, I would not known I had the aneurism, which means I would have continued to work out as hard as before, and may not have been here today. So my surgery will be set in a couple weeks. I prayed for you.

    God bless,
    Scott Woodward

    Sent from my iPhone





  • 7.  RE: New member

    Posted 01-06-2020 19:00
    There is no "supposed to" Carrie.  Just follow your heart in giving back to others and in living your gratutude.

    All the best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 8.  RE: New member

    Posted 01-06-2020 20:39
    Oh. I never saw it that way. Thank you I'll do my best.

    ------------------------------
    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
    ------------------------------



  • 9.  RE: New member

    Posted 01-06-2020 20:44
    It's simple yet forward. I'll try to not let it get to me. Sometimes I can't stop thinking about the severity of my case.  Everything happened so fast.

    ------------------------------
    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
    ------------------------------



  • 10.  RE: New member

    Posted 02-06-2020 18:06
    Dear Ira.
    What a fantastic reply. And so true. I give thanks to the surgeon that saved my life and all the others who took such great care of me. Tomorrow I'm scheduled to tell my story to a social club. I've never talked about what I'm going through....except for close friends. I'm a little nervous 😬
    Thanks again.
    Margo

    ------------------------------
    Margo Floyd
    ------------------------------



  • 11.  RE: New member

    Posted 02-07-2020 03:35
    Good luck telling your story today, Margo.  Please let us know how it goes and how you feel afterwards.

    All the best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 12.  RE: New member

    Posted 01-05-2020 09:21
    Carrie, your medical history is a lot more complicated than mine, but I know what you mean by survivor's guilt. And I struggle with feeling persecuted - why did God give me this enormous medical burden to carry? What did I do to deserve it? Then I spend time in my cardiologist's waiting room, surrounded by people who are far, far worse off than I am, and feel guilty for my continuing pity party. I agree with Ira that the key is to channel the energy from my personal struggles into help for other struggling people. When I first joined Mended Hearts, I told my cardiac support program's psychotherapist that I felt like I had nothing worth sharing with other people. She told me that even when other members don't reply to my posts, there may be a dozen who read it and gain something from it. So hang in there. Your mended heart is in the right place.

    ------------------------------
    Jean McMillan
    TN
    ------------------------------



  • 13.  RE: New member

    Posted 01-06-2020 12:19
    Welcome to the community! I'm glad you're here. I'm also very glad that you are doing well. I wanted to address the comment about survivors guilt. I think that these feelings are VERY common to people who experience a life changing event. I know for me, there were times I struggled with the guilt after my son (My heart warrior) was thriving and doing well and a friend lost their child to the same defect. It's tough to understand those feelings and it's sometimes even harder to vocalize them. I'm so grateful for the miracle that my son is and I am blessed to have him. But, I also know that there are so many parents who don't have that, and that makes me really sad.
    Keep working on getting your energy back. That comes slowly. Don't push it, but also keep moving. Every day move a bit more than the day before. It will come!

    Good luck!

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------



  • 14.  RE: New member

    Posted 01-06-2020 20:30
    Yes! That is what I mean. Even when I hear about someone passed from a sudden heartache on tv I cry. At the same time, I in awe at the fact that I didn't even have to experience a heart attack.

    ------------------------------
    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
    ------------------------------



  • 15.  RE: New member

    Posted 02-28-2020 21:25
    HOWDY CARRIE,
    I CERTAINLY UNDERSTAND THE SITUATION OF SURVIVORS QUILT,
    WHEN I WAS 11 YEARS OLD IN 1969 I HAD AN OH SURGERY FOR AN AORTIC STENOSIS. BACK THEN, ALL THEY COULD DO WAS SCRAPE SOME OF THE MATERIAL FROM THE VALVE AND WAIT FOR CARDIAC ADVANCES>
    (and by the way, the cardiac advances made over the last 50 years are absolutely astronomical---heart transplant? surgeons could only dream of one day being able to do so. and now...a three month old baby getting a new heart Thank the God as you perceive him!)

    ANY WAY, AT 11, I WAS CONFUSED AND DEPRESSED OF BEING ALIVE. WHY ME?
    THEN, in 1972,I Fainted and was rushed to Birmingham Alabama where they opened me up and put in a  prosthetic aortic valve. When I woke up, I  started wondering if my Great Spirit,( my deity as I perceive him or her) wanted me around for a reason. Still survivors quilt, especially when the night before my operation, a boy my age passed away in the next room with also an aortic stenosis, one day away from his scheduled surgery. I cried in the bed, unconsolable, and kept screaming, "it should have been me that died, not him!"

    Well, the valve I received turned out to be defective, and I was recalled, (like a Ford Pinto) for a THIRD OH. AT nineteen years of age, I made my farewells to all my friends....THIS time I knew I was not coming back.


    BUT I DID!
    I AM NOW 63 years old, and have had a lot quilt, emotional trauma and depression from all that happened, but I am getting the support I need to heal.
    SO NOW,THE GREAT SPIRIT HAS GIVEN ME the message:  I AM NEEDED.
    I AM  NOW A CERTIFIED HOSPICE VOLUNTEER, HAVE WORKED WITH CHILDREN MOST OF MY ADULT LIFE, AND AM AN AVID ACTIVIST for climate change and human rights

    LIKE ANDREA AND IRA AND OTHERS HAVE SAID, we are HERE for a reason, to serve, to give back, AND TO CELEBRATE OUR SURVIVAL
    BECAUSE WE ARE NEEDED>

    BLESSED BE
    KEN LEVINE



    ------------------------------
    ken levine
    volunteer, retired
    802-236-8186
    kenpaullevine@gmail.com
    Middlebury, Vermont
    05753
    United States of America
    ------------------------------



  • 16.  RE: New member

    Posted 03-03-2020 18:48
    Hi Ken. Thank you for sharing your story with me. Talking with so many on this site has already helped me move on in a much more positive way. I have lost 2 acquaintances that have passed in the last month from cardiac arrest. It's crazy. I'm amazed at how many people have heart issues and don't even know it. My 1 1/2. Year OHS anniversary is this month. I'm so excited about life. Since surgery I decided I'm not sitting around in my bubble anymore. I'm getting my girls out and I out and about to explore our country. Since I have started to shake off the guilt I feel energy coming back. That guilt can really hold a person down. I never thought about volunteering with heart patients. That sounds satisfying. For now I am focused on my new career working as a para with k-1st graders. They keep me moving on my toes.

    God Bless

    ------------------------------
    [Carrie] [Kashani]
    Parapro
    ISD
    [White Bear Lake [MN]
    Carrie
    ------------------------------



  • 17.  RE: New member

    Posted 03-03-2020 20:45
    Carrie
    THAT IS A GREAT DIRECTION TO BE GOING!
    HOW WONDERFUL YOU HAVE YOUR DAUGHTERS TO EXPLORE THE WORLD WITH, SO MUCH TO SEE.
    AND THOSE LITTLE TYKES, WOW THAT WILL MAKE YOU SEE HOW THEY SEE THEIR WORLD.
    YOU ARE BLESSED!
    PEACE MY FRIEND
    KEN

    ------------------------------
    ken levine
    volunteer, retired
    802-236-8186
    kenpaullevine@gmail.com
    Middlebury, Vermont
    05753
    United States of America
    ------------------------------