I’m taking more responsibility for my medications – my parents aren’t always going to be here! Now I put notifications on my cell phone and all that. I pay attention. Before I take my medications, I make sure everything is what it’s supposed to be – I don’t just kick them back.
Anthony, 20
As soon as I turned eighteen
My mom was like, “You’re going off to college. You’re going to have to know your meds. You’re going to have to learn what to take.” And then I guess as soon as I turned eighteen, I had to sign all of the consent forms. And when I had rejection last August, that was the first time that I was eighteen and I was hospitalized, so I was signing all of the things that my parents had previously signed! Like, wow! Before I went under anesthesia, they had me sign the consent form, and my parents didn’t sign it!
I was like, “Oh my gosh, I’m signing my life away!” It was nerve-racking. Honestly, signing the consent form, I was like, “Oh jeez, if something goes wrong, I want to be able to say, like, this went wrong! On your account!” So I felt a little, “Ahhhh!” But I knew, “You’re gonna have to do this,” so I signed it. And nothing went wrong!
[Later]
I want to be pretty independent once I go to college. It’s such a minor thing in my life now…I mean, obviously, with all of my records, they will see that I have had a transplant, but it’s not something that really impacts my day-to-day life, so I’m going to be pretty independent and self-sufficient about it.
Katie, 19
Maybe now’s the time
I just remember going to Children’s for one of my follow up appointments, and I saw one of the doctors in clinic. It was the first time I saw that particular doctor, and he was actually surprised that he had never met me before because I had my transplant at that point for like eight or nine years, and he was concerned why I was still being seen at Children’s. I said no one told me otherwise, it was just my routine checkup. And he had said, “Maybe now’s the time for you to transition over to the Brigham.” I spoke with my doctor, spoke with the transplant coordinator, and it was decided that would be best, even though I would miss all the wonderful support and care I got from the transplant program at Children’s.
I made the transition and to be honest, in my particular case it was probably a little easier because I had already built relationships at the Brigham, because I saw them when I had the LVAD implanted and was followed for that care. So it wasn’t like I had to learn everybody all over again.
Johnny, 28
Part of being an adult
Me personally, I’ve always been very proactive about my healthcare and been very involved in my treatment course. I think with Children’s, I really didn’t have to do too much thinking or preparation on my own, because I had a lot of support and care from the nurses and doctors, and was really followed closely. And I would see doctors and nurses at Children’s more often: at one point toward the end of being a patient at Children’s I was seen almost every three months, and over at the Brigham, their protocol for patients who aren’t currently having issues is twice a year, every six months. So in that sense, there is a little more responsibility on the patient to provide input and their own responsibility to be proactive about, “We need to go to this appointment, we need to call about this, we have to get a referral,” whatever. There is a little more legwork, but I guess that’s part of being an adult.
Johnny, 28
Definitely more responsibility
My mom doesn’t really have a say in what I do with my medical care. I mean, I take her advice and everything, but the doctors there aren’t talking to her, they talk directly to me. It’s definitely more responsibility: knowing your medications, knowing what’s going on, making sure that you stand your ground, and if you do think that something’s wrong, you make sure that that’s sought out and seen. I don’t rely on my parents as much as I used to.
Samantha, 22