He has had MANY hospital stays.
After this last one, I quite honestly don't know if he'd have been discharged when he did, or be doing as well as he is, if it weren't for myself, our family members and Mark's kidney doctor being right there to advocate for him.
I say that because there is a serious lack of proper communication in hospitals. Not only that, but probably half of doctors and nurses don't treat patients and their families with respect.
I promise, this is not me being defensive or overly sensitive or whatever else it might be. I have been Mark's significant other for nearly 18 years now. I've been around the hospital block a time or two. I really do know of where I speak.
So many medical professionals think us average schmoes don't know our asses from a hole in the ground. That, or they're just seriously lacking in bedside manner. Either way, they forget that the person in the bed is a human being who is loved.
Some are amazing. Some will listen and answer the hundreds of questions you throw at them with patience and sincerity, without dumbing everything down. Them I love. Them I want to take home with me and make a part of my family. And when they're being awesome like that, I thank them profusely. I am sure to let them know how much I appreciate how well they're doing their job.
But the ones who come into Mark's hospital room and act like my presence is a nuisance, or like they think I can't possibly understand the big words they're using because I didn't go to medical school....they can kiss my ass. And not just me, but anyone they treat that way, you too, should not stand for it.
Doctors and nurses know what they're talking about medically, and you can get a sense of just how much they know and if you can trust them with your loved one. But those of us who love someone who is sick, we know the PERSON they're trying to treat. And someone like me, who loves someone who is chronically ill, I know just as much about Mark's medical history as he does. The two of us got this. Both of us can comprehend what is going on, we can learn and adapt. Yet still, we are underestimated. And I just don't think it's OK.
Patients and their loved ones have the right to ask as many questions as they need to, and they should. No one should take what a doctor tells them without asking questions. Everyone should leave a doctor's office or hospital understanding what is going on and what is being done about it. Everyone, the doctor and patient alike, should be on the same page, with the same goals in mind.
What I said about the lack of communication in hospitals? That is like ten times more frustrating than being talked down to. The latter is annoying, but you can brush it off. When the doctors treating Mark won't TALK TO EACH OTHER, I have to get pushy. And then I look like a bitch. I really don't like looking like a bitch.
But it's not MY problem, it's theirs. During this last hospital stay Mark had his nephrologist (dialysis), a couple of cardiologists and either critical care or floor docs overseeing his care. Once he started improving and was moved out of critical care, I swear if we hadn't made a bunch of noise about getting him discharged, he might still be there.
Perhaps that's a slight exaggeration, but you get the idea. He was doing well enough to get up out of bed, use the bathroom on his own and sit in other parts of the room, even leave his room for a little walk, yet they were making no moves towards releasing him. When we asked about discharge, everyone was clueless! The nurse didn't know what the plan was, nor did the Hospitalist (floor doc). We asked them to get his doctors on the same page. It took 2 days. Mark was not happy.
And then....and then! The biggest problem was the cardiologists. Mark was in the hospital for heart problems, yet there wasn't a cardiologist in sight. Or, they would come, read his stats, make some notes in his chart and just leave without talking to us. I started referring to them as ninja doctors. When one of them finally showed himself, Mark read him the riot act. He felt like they had written him off. It was seriously ridiculous!
Here's the thing. Yes, doctors and nurses are highly trained individuals who most likely know what they're doing. But, we know what we're doing too. They know medical stuff; we know personal stuff. And then when you're like Mark and I and have been dealing with this crap for ages, you also know a lot of medical stuff.
I love Mark's home health nurse right now. She is one who did not walk into our situation and assume we know nothing. She came in with an open mind, listened to us and determined that we have things well in hand. She is impressed with our knowledge of Mark's meds and what he needs. I am impressed that she sees it.
It's a matter of respect. If doctors and nurses want patients and loved ones to respect them, they need to respect us too. And in the absence of that, we must be advocates.
The person in the bed is a human being who is loved.
