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
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ken levine
volunteer, retired
802-236-8186
kenpaullevine@gmail.comMiddlebury, Vermont
05753
United States of America
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Original Message:
Sent: 01-06-2020 20:30
From: Carrie Kashani
Subject: New member
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.
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Carrie Kashani
Parapro
ISD
White Bear Lake MN
Original Message:
Sent: 01-06-2020 12:19
From: Andrea Baer
Subject: New member
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!
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Andrea Baer
Grapeville PA
(724) 396-7820
Original Message:
Sent: 01-04-2020 14:15
From: Carrie Kashani
Subject: New member
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.
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Carrie Kashani
Parapro
ISD
White Bear Lake MN
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