As I’ve gotten older, I think doctors have definitely talked more to me rather than to my parents, and that’s one thing that is good for doctors to remember—that even young kids, they’re still the patient so it’s good to talk to them rather than just talk to the parents. Because I think if you explain to a kid what’s going on, it makes them less nervous because they know what to expect and what’s realistic for the future. Just be honest.
– Emily, age 19, Pacemaker
I wish that first doctor had told me there was another option other than being on a beta blocker my whole life. He just said straight-up, “you won’t be able to play sports.” He didn’t have to do it as harshly as he did it. I think he did it because he had two other patients at the time who were diagnosed with the same thing. He hadn’t restricted them and then one of them, their artery got closed up and then he was on a waiting list for a heart transplant. So I can see from that doctor’s point of view why he said it to me that way, but from a patient’s point of view, we didn’t know his other patients’ stories. He didn’t need to be as harsh as he was up front.
– James, age 20, Anomalous Coronary Artery
I’ve had the same cardiologist as far back as I can remember, like since I was five apparently. So she’s almost like family now. Like, I invited her to graduation from high school. Everyone’s outgoing at the hospital, you see the same people every time. Like there’s one woman who sits there and makes appointments, but she’s been there as far back as I can remember. Every time I walk in, “Hey Jake, how are you? How are you doing?” She knows exactly who I am. I’m only there once every six months, I don’t know how she remembers, but that means a lot. I mean, no one is going to be a fan of being in the hospital because it’s just kind of crappy to be there. But usually the nurses and doctors are really friendly and accommodating.
I also spoke to a bunch of medical school students once about what it’s like to be a patient. I was telling them, “Be outgoing” and other things like, “if it’s a family, you don’t know what’s going on, because it’s obviously tough for the family to have a child with a heart defect,” and that, “the kid is probably not going to be happy being in a doctor’s appointment, they’re not being nasty towards you, they’re just upset with what’s going on.” I said, “Don’t talk down to your patients” because there was one doctor in particular who treated me like I didn’t know what was going on in my life. That was the last time I ever saw him because there’s no reason for a doctor to treat a patient like that. And I said, “try to be friendly and try to help these kids be a little happier.”
– Jake, age 21, HLHS