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!
P.S. I WENT TO MY CARDIOLOGIST LAST WEEK AND THE PROSTHETIC VALVE I HAVE HAD FOR 42 YEARS IS LOOKING GREAT!!!!!!!!!!!!!!!!
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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: 04-25-2019 14:21
From: Andrea Baer
Subject: Hello
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!
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Andrea Baer
Grapeville PA
(724) 396-7820
Original Message:
Sent: 04-25-2019 09:18
From: Charles Capien
Subject: Hello
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.
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Charles
Prior Lake MN
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