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Questions About Emotional/psychic Recovery

Hello, I'm 33 and 3 years ago I had my aortic valve replaced. I almost didn't survive the surgery and my BP dropped to 50/30. At that time I received my first of 9 blood transfusions over a 3 week period. I had severe complications including significant pleural effusion and was never given any pain medication beyond percocet.  While I was in the ICU I experienced bizarre hallucinations, which I've since learned is called "ICU psychosis." Two days after I was released from the hospital I was worse than ever with unimaginable pain and fever and I knew I was dying. Back in the ER they told me I had pericarditis and tamponade and my heart was shutting down. They immediately took me back to surgery to cut a window in my pericardium and place (more) chest tubes. (Is is just me or were the chest tubes the worst part??) This particular situation and accompanying surgery (thorecotomy) is one of the highest risk surgeries and survival statistics aren't particularly impressive but I was in too much pain to be concerned about that.

As a result of all this I had to drop out of my PhD program and move back home. I'll have to have my aortic valve replaced again in a few years, and it's possible that my mitral valve will be replaced as well.

Today I'm completely recovered...physically. Unfortunately my emotional/psychic recovery hasn't been as easy. I have PTSD from the heart surgeries and thoracic procedures, and significant grief and anger over the various changes my life course took as a result. I know PTSD and emotional changes are fairly common in heart surgery survivors, but information on the "psychic" aspects of the experience are more scarce. It's difficult to explain what I mean beyond saying that there is something fundamentally "different" about who I am, at a level deeper than my personality. I feel things differently and have a number of new sensory experiences that I'm sure some people would describe as crazy. (It seems sometimes I can see people's energy and it can be extremely overwhelming.) There are many other littler things that have also changed. For example I'm more sensitive to smell, I avoid all sweets, I see "shooting stars" in my visual field, and I've developed some sort of chemical sensitivity. In general I don't know this person I've become, and it's upsetting and alienating.

Has anyone else had any kind of long term recovery issues focused around emotional and psychic changes? I talk to family and my therapist about the PTSD and grief stuff, but people who haven't been through it themselves have a hard time understanding these other aspects.

Thanks everyone, and I wish you all healthy futures.
Febrile Febrile 31-35, F 4 Responses May 23, 2012

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I have been told it is the heartlung bypass machine that gives you the hallucinations. I was on ECMO as well and I haven't been the same since. I have nightmares and often feel I'm not in my own skin. I wish you well with your recovery.

hi its Tim again just read your story and theres some very similar points and issues that i am experiencing at the momemnt , ive been asked to do some form of therapy is it a good idea?

I totally understand where you are coming from. On June 13th of this year, I went in to a pericardial biopsy and awoke 4 days later in ICU still to my mother's face telling me the pericardial sack had to be removed off my heart and during the operation I had to intubted 2 times and had 3 breathing tubes, hence suffered a brain swell which, what you speak off I felt too. I live in Harrisburg, PA and spent 9 days with no one ever letting me know of support groups for the emotional trauma I suffered. I appreciate what you had to say and also wish you continued healing.

My surgery was to remove a myxoma (tumor) from my heart. The surgery itself went well but I had complications afterward that left a huge hematoma at the ba<x>se of my lungs and in the sack around my heart. The former reduced my ability to breath and I was on forced oxygen for a few days. I was very sleepy from the lack of oxygen in my blood and I had the weirdest and most vivid dreams. At one point I imagined I was floating in a dark crypt filled with gargoyles and demons. I was given some medication to ease my anxiety but this only changed the visions to floating inside of Santa's workshop with the elves! (I'm Jewish, where the frag did these visions come from!) Eventually the hematomas were removed via a needle biopsy and I was able to get off the oxygen and breath normally. I was in the hospital between 3-4 weeks after the surgery before I was strong enough to come home. And....my surgery was supposed to be a simple procedure as heart surgery goes with a recovery time of a week in the hospital.