I don't want a new pacer....

I was born with a "1/2 heart". Two of my chambers were underdeveloped. I was born with no tricuspid valve. My left lung became part of my heart. I have had 4 major open hearts, and several little minor ones. In "O3" I went in to for a fix of a leaky valve. I still have my PIG and now have a Bovine valve. While they were in, they placed a Pace Maker in.

It has been almost 10 years. I am PM dependent. No health insurance, My husband just died last week. I am 33. I never wanted the pace maker. I always saw it as a form of artificial make up. I didn't want the last procedure in 03, but my family won't leave me alone about it. Now I am up again. I still feel the same way, I don't want the pacemaker. I am tired of surgeries. I have developed cirrhosis to the liver (cardiac), complex seizure disorder, lost of white blood cells, pulmonary dysfunction, and the list goes on. I am exhausted.

My family understands, yet they don't. I told them I will not have the pacer redone. I have told them I am done with doctors, I just want a quality of life. I am so tired. The fight has just wore me down. I feel I have had a very-very good life. I have traveled, loved, laughed.

The reason I am posting is, I am trying to help my friends and family understand what happens, once the PM "shuts off." My words are not getting to their heads. They stop listening at "when the battery runs out." Does anyone else have a better idea how to explain this and help them understand?

3 Comments

thanks

by ladywhisper - 2012-11-07 11:11:05

My Charlie passed away from a massive heart attack at 40. Never had a problem with is heart ever before. Lean, fit and healthy as an ox. The only arguments him and I would ever have, would be about my health. He always told me, I had no say of what I wanted till he was gone.

We had found that my next produce was to be in Feb. with only a 45% survival rate. I didn't want it, and he did. But I feel God took him so he wouldn't have to suffer the pain of losing me. I feel this is God and his way of letting me get "my way."

I will be calling Hospice after I take my Charlie back home. But I never thought about the Lawyer part. Thank you for that piece of advice. And thank you for understanding my point of view. So few just don't get it.

Just an added note:

by ladywhisper - 2012-11-07 11:11:35

Please don't think I have given up hope on life. I am not suicidal by any means. I don't believe one should take their own life. However, I do believe one should have control over their own body. I love my life. But also have developed Strokes too. I have had One major, One bi-lateral stroke, and many TIAs. Like I said my health issues just keep growing.

I have been trying to explain to them as a cancer patient would. (which I really don't see the difference). I just don't want anyone to think I have given up on "hope" or my own life. Please don't think that...

What I want is peace, and to be able to enjoy what God has given me. The on going of doctor appoints and bills is just too much stress, and I really want to enjoy what I have. I hope that makes more sense.

Same

by ReWired - 2012-11-07 11:11:44

I agree with Angry Sparrow, but I say build a new road that you lay the brickwork and no one else. If your tired do use a DNR, but if your tired of living the way you are right now. Build that new road, any one that does not like it can get the hell off. Live those moments for yourself, I cannot step in your shoes or even walk the same pathway you have since I am new to this.
But, I dont care about the Bump on my chest, that bump has a device under it that keeps me alive and if I had to have 10 of them I would, I dont care about dying because if I worried about that I could not live, I dont care about bills anymore why worry about having something nice just to worry the hell about it. I dont worry about friends or family, i am living for myself now, I lived 47 years for them, the next 47 is for me.

You know you're wired when...

You fondly named your implanted buddy.

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