I got a lung infection from my heart, actually. And I still have the lung infection. It’s this thing called histoplasmosis, so I’m on these hideous meds that I have to take for like a year…they’re just huge, and they have these little white beads in them. And the first time I had them, I vomited, and there were these little white beads everywhere. It was gross!
I got the infection right after Thanksgiving. And then I had a fever of 105 for 28 days.
I was pretty mad actually…I know I’d rather have the lung infection than rejection, but it’s kind of just annoying to think I might have it for the rest of my life.
Eva, 13
Wasn’t taking my meds
I have been having problems- I wasn’t taking my medications like I was supposed to and I was running away. In the end I got placed in the hospital because I wasn’t taking my meds and they were concerned. Ever since then I have been stable and trying to get out of this mess. I am going to my monthly appointments at the hospital and taking good care of myself. When I went to one of my appointments they had some heck of a news for me- they told me I may need another transplant within another year but if I don’t show them I can take good care of myself by taking my meds, eating well, getting good rest and being stable, they will not give me the other heart if I need it. If I show them I can be stable for 6 months they will put me on the transplant list. Ever since March I have been on the transplant list.
Anonymous
That other thing that makes you different
Two years ago about now, I had to get a central line put in for photopheresis, I had to get my tonsils and adenoids out, I had an open lung biopsy at one point…it’s just kind of the maintenance that it requires that’s difficult sometimes.I had to go through, like, all of
I had to go through, like, all of seventh grade with a central line in and it was a huge thing. So I had to get a rolling backpack that I had to bring from class to class, and middle school is hard as it is, to have that other thing that makes you different from the crowd!
Laura, 14
I was really mad
Jess: I was mad. I was really mad, only way I can put it, I was mad. I wanted [my new lungs] out of me and I was like, “I want my own lungs back. I don’t care, I want them back.”…I was mad at the lungs. I was like, “Why aren’t you working? You’re supposed to be working!”…I kind of kept it locked in, until somebody got me really mad, and then I’d just snap off at them. Then, like, “Oops, sorry!”
Mom: She would shut down a lot, especially when it came to PT. We sat in the hallway once for two hours.
Jess: Yeah, it’s like, “Why am I doing this, if I’m just going to end up on vent two days later? I’m not going to build all this energy to waste laying in bed.”
It took a while for me to actually get up and do stuff. I fought them really hard.
Jess, 18 and mother
When I was in fourth grade, I had an abscess form in my liver, which became infected. I was very, very sick and had to go to the hospital for a long time, a couple months.
They treated it with tubes, antibiotics, that kind of thing…I was frustrated. I couldn’t really do anything about it – you’re too sick to do anything.
David, 15
It didn’t fix it completely
Walter: Going home was really nice. I couldn’t be in contact for six weeks with anybody, so it was kind of far away, but then at six weeks I got a blood clot. So that happened, and then that, like, stopped my bile ducts, not completely, and that’s why I’m back here. And then I also between that time had a hepaticojejunostomy.
Walter, 11
My numbers have gone way down
The blood clot affected my bile duct mostly, so they put this drain in to help make them flow, and I had a little bag that would drain the bile out of me. So it lowered, like, all of my numbers. Now we’re seeing if it can drain by itself without problems.
So that’s pretty much what it’s about, my bile and bilirubin. This almost acts as a stent…I think it has helped, because my numbers have gone way down.
Walter, 11
Trying to act normal
The day that we were supposed to go to the hospital so I could get treated for rejection, we also went to the mall. It made me feel a little bit better but at times I was just afraid. I would put on a smile and I would laugh and try to act normal. But inside I was really scared and had that gut feeling like, “Oh my god, what if this doesn’t work?” Just having to lose my mom’s kidney would be really bad and I would cry forever.
Anonymous
Live anyway!
Mom: Meg, how has it been since transplant? Have you been in the hospital much?
Meg: Yes and no.
Mom: Yeah, not as much as pre-transplant. But Meg unfortunately has some really serious complications.
Mom: Right, and rejection.
Meg: Yeah, and rejection, twice! Not my favorite thing in the entire world.
Mom: So we were just in the hospital from November until February this past year.
Meg: Say it! Say it!
Mom: So we have a motto in our family, it’s true, that Meg really, really likes. And we always say, “Live anyway!”
Meg: L-I-V-E A-N-Y-W-A-Y!
Meg, 9 and mother
Because of the immune suppression
The majority of the time I spent in the hospital and operations and surgeries and treatments I had to have and all that, that wasn’t even because of the transplant necessarily, it was just because of the immune suppression. Just effects of being on those medications for the transplant – so I guess indirectly related to it, but it wasn’t my liver or intestines were the problem. It was just all those tubes really messed up my lungs and all of that.
I remember being really, really scared. I was terrified! I also became really angry, this whole, “Why did this happen to me?” kind of thing, really angry at that. I mean, I knew my doctors were trying to do what was best for me, but what was best for me was really a lot of operations, a lot of recovery, a lot of physical pain. So I was really angry at them and I was angry at myself. I was just really mad, like, “Ugh! Why me?”
Katie, 19
Katie, 19
I was beginning to have mild rejection
This past August, I ran into a little bit of trouble where I did end up having a little bit of EBV. Actually, they lowered my dose of the main medication Tacrolimus that I was on, that helps you not have rejection. They’ve been trying to get me off of it, because I’ve had the transplant for so long, and it does have side effects – you get headaches, you get trouble sleeping – so they were going to see if after 19 years, if it was okay to start lowering the dosage. So they started lowering the dosage, and once I was on one tablet a day, I did notice that my liver numbers did go up, and I was beginning to have mild rejection. So they put me right back on two again, which I’m now on.
It was very crazy and a whirlwind! I did have to have a liver biopsy. And when they put me back on my normal dosage, my liver numbers evened out totally fine and rejection stopped completely. And knock on wood, I’ve been totally fine since then.
It was scary. I got very frustrated. And I mean, I forget to take my meds sometimes, yes, but I’ve never run into a problem with it. And I was kind of frustrated like, “I’ve had this 19 years, come on! Really?”
Katie, 19