Melissa Winger

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.

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.

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.

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.

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,

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

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.

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.

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 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.

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.