Medical Malpractice - Psychological Impact

Post Reply New Topic

I'm 28. For 7+ years now, I've had a pacemaker for electrical issues in my heart. About 18 months ago, I had it replaced for the first time. What occurred since then has put me into a mental state that is very stressful, I can't seem to get a hold of myself again.

After the new pacer surgery, I had been diagnosed at the follow-up with cardiomyopathy (weakening of heart muscle contraction, fatigue, lack of oxygen flow). I was given a prescription for an ACE Inhibitor, and several references to websites, to books. Reading these resources highlighted to me the severity of such a condition, things the doctor apparently didn't have the courage to tell me face-to-face. Things like my high mortality rate, the fact that I may only have 10-15 years to live, and would likely require future invasive surgeries. This was the turning point of my life, of my descent into anxiety, stress, cynicism, and depression. I spent 8 months feeling desperately out of control of my of emotions, scared, exhausted.

I also discovered during this time that my insurance company had not provided the coverage as they claimed they would, and I would be owing $50,000 in medical bills. I am still being chased down for this debt today, and the legal situation itself is stressful.

Around the middle of 2010, I decided to deny / reject my doctor's findings and prognosis, and so I went to an electrophysiologist (pacer specialist) who soon discovered that my pacer had not been properly programmed. I had been rushed in and out of surgery without seeing an electrical specialist. After a few meetings with the one I found, I was properly programmed, and I felt much better physically, and had no real physical limitations. I was relieved, however the mortality-related stress damage had been done, the pathways had been laid down. I have since been unable to avoid entering into that same helpless, depressed, overly attentive, and anxious state from time to time, often in relation to my illiteracy in the social activities of people around me. I drive myself to breakdowns easily, and my S.O. of 10 years is being adversely affected by this state. I feel so sorry for her, and immensely guilty to not have a familiar grasp of myself, to not be able to prevent these cascading feelings of frustration, anger, etc.

All of this on top of having the various illiteracies of Asperger's. I don't know what to do. It is at a point where because of my breakdowns I am being excluded and negatively reinforced socially - both through me, and vicarously through the friends of my S.O. Knowing this is going on only perpetuates the cycles of feeling helpless, angry, judgementalness, and hostility, even. I want to return to a equilibrium that is my previous calm, reasonable, and in control self I had been before all of this. I don't know this new person at all, and in fact I'm kind of an obsessive, aloof and socially cynical ass going by appearances (which I understand most people do). It's all the worst parts of me, amplified and untempered by my many positive aspects. I am finding society very intolerant of people who go through anything like this without simply bouncing back, or putting up a casual passive social pretense about it. The fact is it affected me profoundly. Why are people so unconcerned with circumstances of behaviors? Why are we not allowed to experience emotional trauma? I don't understand the social denial and rejection of such basic human experiences.

I also have no stress-coping vices that people take for granted. I can't drink, smoke, do drugs, etc. So, there's that factor also.

My husband was born with a congenital heart defect, Transposition of the Greater Arteries. By age six he had three surgeries, and when he was 25 we found out that he was going to need another one, and soon, because he had an aortic aneurism. He needed a section of his aorta replaced with a graft, and a mechanical heart valve installed (which means he takes blood thinners for the rest of his life). Sometimes they will use a sheeps heart valve in older patients, but it needs to be replaced every ten years or so. Because he had already been operated on so many times, they used the permanent option, so hopefully we won't see more surgeries. We thought for the first year afterwards that he may need a pacemaker, but so far so good. In the future he may get there though.
The news of this, and the following surgery plunged us both into a crazy depression. I started seeing the world in a completely different way as well, and although I am over the surgery now...I've never looked at things the same. For me (and him too) it was like our "growing up point" where we started realizing how fragile we were, and it was disturbing.
We just had to find something else to focus on, and give our attention to. We had a baby, and we focused so much attention on him, we forgot about the stressful past few years. Sometimes we talk about those "dark times" we had together, and I feel stronger having come through.
Like I said, I've never gone back to looking at the world how I used to...because that's impossible now. I HAVE learned how to act when I need to, and sometimes that is enough to distract me from my thoughts. We both know that he could have more difficulty in the future, but we'll cross that bridge when we get there. It's the same with the other things that I stress about...the key is distraction. How to distract yourself, I don't know you well enough to suggest anything, but for us it took COMPLETELY changing our lives to distract us.

I have noticed a change in males who have heart attacks. They become intensely fearful and very sensitive to the lightest change in their body. They come to ER's for GERD, stomach flu, pink eye, and very very minor compliants because of this change that occured with their heart attack. I think in part its being faced with one's own mortality, and that any one time, no matter what, people die.