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kasarberang
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@Jesse The BabySpiderBoyI'm moving this conversation here, as I always feel bad whenever we derail a thread to talk about something unrelated.
To try and answer your question of why other with my condition did not live very long.
Because the level of care required is higher than the standards of the medical industry. They would get infection after infection caused by nurses/doctors not being careful enough. Even I have had many infections due to medical neglect.
When I was 2 I had my last site for my central line to go, you have a certain amount of viable places and all of mine were gone by the age of 2. When that happened my mom learned how to do all my medical stuff and made sure she did things really carefully and really well. She (up until my dad died) had the highest standards as far as my care was concerned. I have gotten very few infections since then. But even my younger sister died from medical neglect. The medical industry is shit, they genuinely don't care and often times do the minimum required to not get fired.
Not everyone is this way, there are a few genuinely great nurses and doctors out there, but they are the exception, not the rule.
You know that saying "Male bullies become cops, female bullies become nurses?" from my experience, that's very true.
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Is it a case of the doctors NOT knowing what to do with people with your condition, or knowing fully what to do and just NOT caring???? Cuz in my experience, I've ALWAYS had GREAT medical Care. But then again, I've always been on various sorts of programs, like Medicaid and Medicare. And when you say infections, do you mean like infections caused by NOT keeping the wound clean per say? Because if That's the case, then I don't know where you got your medical care at, but it sounds like the medical care system of a third world country. Because I find it VERY HARD to believe that in the U.S doctors would be THAT negligent. But then again, I COULD see that happening, I just find it VERY UNLIKELY.
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