Getting my mind off it
In class, I wouldn’t really pay attention because whenever the phone rang I was wondering if it was going to be for me. And I would wake up in the middle of the night thinking someone woke me up to get a transplant. But I actually got it pretty early: two months.
[Later] Cooking helped. It’s just a place for me to go and escape from it all, I guess. I’ll just cook and get my mind off of stuff.
You can’t really travel
It was a nuisance, because you never knew when you’d get the call, so you couldn’t really go on vacation and stuff – because if you go on vacation and then you needed to get back to Boston, it would take too much time, so you can’t really travel or anything.
Every time the phone rang
It was hard, because every time our phone rang, we were like, “Oh my God. Who is it? Is it the hospital?” My mom’s stomach would churn every time the phone rang. It’s like, “Umm…hello?”
Olivia, 15, and mother
It was torture
It was torture. I felt like after the first week I just couldn’t wait. Any time the phone rang I would check. I was just getting antsy because I was feeling horrible on dialysis and I just couldn’t wait to get off. So I was just waiting – I couldn’t wait!
I just wanted it over with
Jess: 116 days I waited to get my lungs.
Mom: We got so we didn’t watch the news, because we’d hear pedestrian killed, and we’re like, “Oh! I wonder where they’re from.” I remember there was one: “Woman dies in fire,”
Jess looks at me…
Jess: It kind of gets like insanity!
Mom: So we finally made a pact that we were not going to watch the news!
Jess, 18, and mother
My heart was getting bad
It all depends on how sick you are: the sicker you are, the higher you are on the list. So I started off pretty low: there wasn’t anything bad going on. Then I was getting sicker – like, right before my transplant, I was dying. It was bad.
I waited about six months. That’s a pretty short waiting time, because sometimes it can be a year to year and a half. [Later] My heart was getting bad. I was losing a lot of weight, my lips were purple, I was pale.
We had a false alarm before. It was pretty upsetting! They called and said we had a heart, and so I was getting prepped for surgery and everything, I was on the premedication. And then at the last minute, the family just decided that they weren’t going to donate the heart.
I was real aggravated, you know what I mean? I was just aggravated how they changed their mind at the last second. They could change somebody’s life! But in a way I understood, because before I knew about my heart issues, I wouldn’t have thought about donating my organs. So I wasn’t sure what it was on their part: whether they just didn’t care, or if they weren’t aware of what they were doing. So I kind of just shrugged it off.
The best treatment is a positive attitude
The most challenging thing, in my opinion, was the wait for a donor. That was challenging because you didn’t know when you were going to get one, and didn’t know if it was going to work, so that was challenging to have that worry and stress on you.
I would worry about a heart and waiting for it, but again, I would come back to saying there’s nothing I can do about it and I just have to pray and hope that things will work out. In my opinion, the best treatment of any type of life challenge is to have a positive attitude. I strongly believe that if someone has a positive attitude, they will be able to conquer anything that is put in front of them.
The most stressful parts
There were two things about the transplant process that were particularly stressful for me. The first stressful part was trying to convince the doctors of how bad I was. Once they had taken out my old lung, I remember asking my surgeon, “So, how was it?” And he said one word: “pathetic.” He said, “I’m not sure how you lasted this long.” So I knew that I had been really sick …The second stressful thing about the process was not knowing whether I would survive. Before my transplant, I had written letters to my siblings and to my parents. I had funeral arrangements made. It wasn’t that I thought that I would die, but I wanted to be sure that if it did happen, things were done. There is also an awful lot of illness in our family, and many of my family members have passed away. Before my transplant I had come to a point where I knew that either way I would win. Either I would be gone, and I would be up there with my loved ones, or I would live and be here. So I knew that either way I would be okay, but I was very concerned about my family. Those were the two biggest issues.