Feeling worse
I think it was last year, because I remember my cardiologist wouldn’t let me do gym anymore. So I kind of just sat there during gym while everybody else ran around and stuff…It was good and bad. I didn’t have to run miles, but then I didn’t get to do the fun games, like dodge ball and stuff.
I would come home and just crash on the couch, and sometimes I wouldn’t be able to do my homework.
Eva, 13
It felt like school
I had to take a bunch of transplant classes. They’re not really classes, but you have to learn all the meds and what’s going to happen and everything. So it’s a lot of learning: what you’re going to have to do, what’s going to happen afterward…It felt like school.
Eva, 13
They couldn’t figure out why
Mom: What we didn’t know is, the Treprostinil actually opens up the vessels and allows the blood to pump and lowers the pressure in the heart, but her secondary cause was discovered after transplant because we donated her lungs to science: she had PVOD, pulmonary veno-occlusive disease, and the Treprostinil was actually working with the disease, so it was progressing the disease at a more rapid rate. But at the time we didn’t know what it was, and every time we would try to go up on her Treprostinil, she would have such severe bone aches you couldn’t even touch her. And we couldn’t figure out why!
Jess: It was miserable…I couldn’t breathe. I was on oxygen 24/7, like maybe 6 liters or more. I think when I was in the hospital I reached up to 20 liters on high flow, and that would just keep me in the 90s. I couldn’t, like, chew and eat, because I would run out of energy and my sats would drop.
Mom: She got really severely sick. She was walking like a little old lady. It was like you couldn’t touch her, her clothes hurt her, she wasn’t eating, she couldn’t walk from here to there without her sats dropping to 52, and she was on 6 to 10 liters and they couldn’t figure out why.
Jess, 18, and mother
Exhausted from trying to eat
I remember waking up every morning, really early (sometimes before dad even got up, and he got up around five), and I would go in and I would vomit and I wouldn’t be able to get back to bed…so then I would go downstairs and be watching TV and just be so tired because I didn’t get a full night sleep, and I couldn’t get back to sleep, and it just was kind of difficult because I knew that most of the time I would have to go back to school that next morning and just go back to being perky.
As I started getting up earlier and earlier every morning, and vomiting more and more, I started to get more out of breath. And I always told mom, “Well, I can’t breathe, so then I can’t eat.” Most people just don’t realize it but while you’re eating, you’re breathing! But I would try to focus on eating, and I would stop breathing for a while. And I was getting really out of breath, because I wasn’t breathing as much! Eating took way longer, so then by the time I was finishing eating, everyone else had moved onto the next thing, and I just was, like, exhausted from trying to eat.
Laura, 14