wiredsailor7 said:Blaming "the system"? Give me a break. What kind of system could possibly be at fault here? You don't need a complex bureaucratic machine or some massive failure in the healthcare infrastructure to explain this away. It’s much simpler than that: someone just didn't bother to look at the patient's medical file and see that they're already living with Parkinson.
Look, you've got four nurses covering thirty patients, and frankly, it’s impossible to mentally process the sheer volume of medical records for that many people at once. Sure, if there's a will, there's a way—I totally get that sentiment—but what are you supposed to do when Medicare cuts the budget down to the absolute bare minimum? It's insulting. Take Rebro Med, for example. The nurses don't even have proper medical gloves for dressing changes or wound care; they're stuck using those flimsy plastic ones you find in a cheap hair dye kit. It would kill the morale of even the most dedicated professional.
What happened to the job requirements? Why on earth does the criteria change so drastically just because a few bucks changed hands behind closed doors? It’s pathetic that this is how things are actually run.
That’s exactly what I’m talking about. The whole system is a complete disaster because corruption has completely gutted it.
Don't take this personally—I'm not coming at you. I'm just absolutely fed up with how everything is playing out.
Just take one look at my username and you can probably guess exactly what kind of hell I've been through. I don't view those people in white coats as gods. They're just professionals who spent years mastering their craft and followed the rules to get where they are—but at the end of the day, they’re still human beings, and humans make mistakes.
Look, I get it. It’s perfectly clear you aren't coming at me personally, and I totally understand why you're so bitter about the whole situation. My username might not be particularly poetic, but believe me, I am one of the many people out there living through this exact same nightmare. Maybe you noticed "For a New Day" in my signature? That organization was founded specifically because we are hell-bent on fixing this broken, dysfunctional system. Doctors, technicians, nurses—we’re all part of the same machine, but at the end of the day, it’s the patients who carry the heaviest burden when everything falls apart. Of course, you find parasites in any industry, but I truly believe most professionals are decent people; they've just been tossed into a rigged game where they have to scramble just to survive. Naturally, the corrupt ones rise to the top, because in a mess like this, cutting corners is always the easiest way to get ahead.
My wife tried to be polite and offer some input to the doctor, just trying to help interpret the results, and you can tell exactly what he thought of her. His response was basically, "Who do you think you are coming in here from out of town and trying to lecture us?"
Look, he’s just exhausted. He’s sick of playing the part of the perpetual victim and explaining his struggles to a room full of people—especially when he knows he probably sounds like an idiot to everyone else anyway. We aren't exactly flies on the wall in those hospital wards, and we don't truly grasp the hell people have to endure behind those sterile white walls. He’s bitter, plain and simple. And honestly? You’re just as bitter as he is.
I’ve always stood firmly on the patient's side, but I’ve also heard the other side of the story—so please, keep this between us. My mother was diagnosed with glioblastoma, an incredibly aggressive brain tumor that you just can't stop permanently. Her treatment involves Temodal, which is covered by Medicare. It’s the kind of thing that extends life slightly and makes those extra days a bit more bearable than if she were doing nothing at all. We were told that once the tumor recurs, Temodal becomes useless because the cancer builds up a resistance to it. However, thanks to the information shared on this forum, we found out directly from experts in Houston that treating a recurrence with Temodal is actually standard practice worldwide, especially if there was a positive response the first time around. By the time we realized this, my mom had already progressed too far into the recurrence to even handle the chemo again. When we finally got our oncologist on the phone, she let it slip: "Medicare won't cover it, so we have to tell you it won't work." Look, I get it—there isn't enough money to go around. I won't dive into the specifics of why, but I assume the limited funds are being diverted toward people who actually stand a chance at a full recovery, rather than someone like my mother, where the goal is simply extending life. But where is the moral right for anyone to rob my mother and me of our precious remaining time together? Where is the right to deny us the option to just buy the Temodal ourselves? Can you even imagine what that was like for the oncologist? It’s devastating. Believe me, any decent doctor wants to cure their patients or at least provide the absolute maximum care possible, but she’s being stripped of that right under the threat of losing her job. Do you see what that does to a system? Regardless of how bitter I feel about it, I think it’s only fair to look at both sides of the coin before we pass judgment.
He isn't in the hospital because of Parkinson's. Right before Christmas, he had an appendectomy—the whole works. After the holidays, they pulled the sutures, but the wound opened up the very next day. He was rushed back to Bjelovar Hospital for another full procedure, and apparently, his intestines had adhered together. Then the fever spiked, and he developed an embolism in his lungs... that's the short version of this nightmare.
Honestly, I just hope they can stabilize him. If his time is truly coming soon, I want him to be at home, surrounded by all of you who love him and can give him the dignity and attention every person deserves in their final days.
Thanks for the advice, 👍
Don't mention it. If you ever need any advice, don't hesitate to reach out.