Things started going downhill
They mentioned transplant then, but they said they weren’t sure: they were going to try me on the beta blocker medicine to see if they could just stop the heart from getting any worse. And then things started going downhill my freshman year of high school. In December, I was having trouble breathing, so I was like, “Mom, bring me to the hospital.” Because I thought I was just sick, like, I had a cold or something. But actually I went into heart failure.
And the worst part about it, I had no idea I was in heart failure, and when I went to the ER, they checked me out and everything, and sent me home – they didn’t see anything wrong!
Anthony, 20
Going home with a central line
They wanted to at least get my heart down to somewhat controlled, because it was so back-pressured with blood. They were trying to put the pressure down on that and help my lungs open up. So Flolan’s the go-to medicine for that, for immediate relief. We never went home on it; they switched me to Treprostinil.
[Later] I was scared my central line was going to get ripped out, because it was right on my chest…We had it all taped up in all different ways so there was no way it could tug.
Jess, 18
Living with a central line
They tried putting me on Flolan. I kind of didn’t want it – it kind of looked weird, and it felt weird, just to carry the pump around.
[Later] There was one day where my line fell out of my chest, so that didn’t feel good. I had to go to the hospital. I was surprisingly calm about it.
RJ, 12
Sleeping under lights
It didn’t really bother me. I was afraid of the dark, because I had lights for so long! It was like a tanning bed, and they put these bulbs in. It was just a blue light, and I slept under it. I had to sleep naked, so I could never have a sleepover really. But if I did get enough sun, like in the summer, then I could sleep with my parents or without my lights if I wanted to.
Walter, 11
I didn’t know what was going to happen
For a few months, I had this thing called plasmaphoresis…I think it was to stop my disease and stuff like that from coming back.
I was on plasmaphoresis and dialysis at the same time – I would bounce from one treatment to another treatment…I would go from upstairs to downstairs, like, “Ahhhh! What’s going on here?”
I was scared about being on dialysis and plasmaphoresis, because I didn’t know what was going to happen…And it took them a couple months to realize that I was supposed to be on plasmaphoresis after dialysis, not before. If they did plasmaphoresis first, my blood pressure would drop into the 30s or 40s. For a couple hours, I would feel okay, but as my fluid started to be taken off, I started to get exhausted. “I don’t feel well, I just want to go to sleep…” You know how, like, when you have a cold? Just drained.
Olivia, 15
Being on a fluid restriction
I couldn’t drink very much because I was on fluid restriction. When I was inpatient, my nurse came up with a trick. She said either suck on grapes, chew gum, or if you were really thirsty, take a little sip of water. That helped me.
Olivia, 15
I’m going to do what I have to do
After they told me I had to go on dialysis, I was thinking, “I’m going to get through it and do what I have to do so I can get a transplant.”
My first time it was strange. I was kind of scared, and when I started seeing the needles, they were way bigger than the little drawing your blood needles! So that was a little bit scary. But then after that it was okay. I never felt sick on dialysis in the beginning. I enjoyed it kind of, because I bonded with the nurses and did my homework and I was just relaxing.
So it wasn’t that bad, but then towards the end before my transplant, I started wanting to get out of it, because I started realizing it’s three times a week – Saturday mornings I’ve got to wake up early and I’ve got to leave school early Tuesdays and Thursdays. I would leave school at 12:30, get to the hospital by 1, get on by 1:30, and then I wouldn’t leave the hospital until like 6. So all I would get to do was take a shower and go to sleep.
Isaiah, 17
Growing up with TPN
Meg: I really hated it. I had this really huge thing that I couldn’t carry myself, so people just had to follow me everywhere.
Mom: Because it was in a backpack, and it was multiple liters of IV medication that had to be administered 24 hours a day.
[Later]
Meg: I really wanted to eat.
Mom: But what happened when you ate?
Meg: [retches]
Mom: She’d get really sick.
Meg, 9, and mother