Melissa Winger
speaker
81 appearances
1 recordings
1 series
first heard Aug 2023
last heard Aug 2023
Melissa Winger’s voice in public audio — every appearance, attributed to the second.
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Appearances
I know. But my own, I've talked about this story a couple times, but it was I've been, I have literally as a patient, me personally have been discharged from a clinic, um, for noncompliance, which that word is horrible because we're saying we're patient centered. We're all about the patient yet follow our orders. You're noncompliant. Um, And you're shamed. I feel like that's a shaming word.
Anyways, I'll go back to my, get off my soapbox on that one. And I had a horrible sudden heart condition at the age of 20. So my son's three and he's at his worst. I'm operating like a mini ICU in my kid's bedroom. And I have an arrhythmia that's out of control. And I would go to the emergency room.
I would wait to go to the emergency room until my night nurse came, but only had night nurses twice, like twice a week. So I would sit with this horrific arrhythmia until I had a night nurse to care for my son. And eventually ended up with a pacemaker and I'm pacemaker dependent. And right after the surgery, they said, you need to be on these blood thinners.
Um, and with blood thinners back then, so we're talking 1999, um, you come in for weekly lab draws. And I wouldn't go. I said, there's no way I'm packing up an immune compromised child hooked up to equipment and feeding tubes once a week to a clinic where they're supposed to everything. I'm not doing it. So I eventually, I didn't get my labs drawn.
I stopped taking the medication and the clinic was, they discharged me. Say for a non-compliant patient. And then, but the next clinic I went to,
completely different story they got me on a protocol for a home um INR machine and was able to do my INRs at home problem solved but they this the new clinic looked at my whole situation and worked with me the last clinic was like these were our orders you didn't follow them bye and I know the orders are for good reason but yeah so all right so I
reasonable yes oh they you know if you trust your provider and they show um even that's the reason for the name of the book is because you know they're gonna they care right they care about what happens to you um do, even if they can't do anything, let's say they're a pulmonologist, and I got a problem with my son's foot. I mean, he can't do anything.
But he's gonna help me, he's gonna get me, you know, he'll be like, Oh, okay, let's do this. Let's do that. And let's get you to where you need to be. Right. So I, the reason for the title of the book was legit conversation where I was losing, I was at my breaking point, I was so frustrated with the process.
And it was around getting my son's feeding tube resized during a hospital stay and was told, no, no, no, you have to be discharged, come back to the surgery appointment, because that's not the goal of the hospitalization. And I just, I remember calling this pediatrician and I'm like, what, seriously, I just need this thing resized. It's leaking. He's got, you know, wounds. This is horrible.
And he said, what do you want me to do? I can't, you know, and I said, I want you to care. I said, I just want you to care. Because I know if you cared, you're going to help me out. You're going to do something. You're going to take one extra step for me somehow. And that's all I just said was, I want you to care. And I kind of basically hung up and then apologized, of course.
I think, you know, I look at the quality lens in a, what are we doing that's of value to the patient? And then how do we get there? So protocols, and I know that they're there for a reason. I try to go on that model of, Why are we doing this? Why are well child visits important? You know, why are all these things important? Because why do they need them?
In these protocols, they can just say like a certain, you know, measure healthcare measure. It's but why? Why is that? Because you just say, you know, a one C's need to be drawn once a year, but we need to go why? You know, why? What's the what's the reason behind that? Well, you know, then you can start seeing all the benefits and the value actually to the patient in the long run.
So I try to focus on that, which can be very hard because I'm always in that patient perspective of why would I do this? Why would I go in and, you know, colonoscopy is a horrible procedure, in my opinion. Why would I want to go in there? And I don't just say you have to because it says in the protocol you have to. No, I want to know why.
And then if you go into the background of the risks, then it's like, oh, I get it. Okay. We don't go to that level of explaining things.
And also, we're at a disadvantage as patients. I want to look things up. I want to research things even. But you can't ever go to your doctor and say you jumped online and looked at stuff. They'll be like, whoa, whoa.
but I think you know physicians and everyone needs to know yeah you're going online let's just accept that patients are jumping online and if it's not them themselves it's a family member let's say oh I just read about this but what we're at a disadvantage is because we don't get the real research those are locked behind you know the journals that are subscription only
are written in ways that no one is going to understand, you know, beyond a doctorate level, right? So where's our information coming from? And it's coming from those sources that we're told are unreliable. Well, then give us the reliable ones.
Unless they've been one themselves. They're so easy to, I go through this in the book that stuff that you're told that you have to do as a patient or a family member is impossible. And I always think you're going to this hospital level care. So even my son starting out with ICU level care, he has this massive team, respiratory therapists, RNs, doctors, intensivists.
He just has this whole team caring for him. Then you go down to like a step down unit, right? So then you still have your RN, you have your doctors rounding every day. You might have a social worker coming in and then you're told to go home and it's just you. But a lot of times my son was on the same equipment. He's on feeding tubes. He's on 10 different medications.
Those medications are to be given like every two hours. Are you kidding me? When do I sleep? And then you get into the outpatient stuff and you're like, ooh, physical therapy, occupational therapy. Do these exercises and these exercises and then speech. And I'm like, this is impossible. But we do that. We put the ownership on the patient. We take pride in getting them home sooner.
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