Getting listed

transplant key


 

transplant_liver_green The transplant evaluation
It was an extensive process, one that was very comprehensive and a little overwhelming, because it was a one-day shot. There was a lot of blood-work drawn. We met with a lot of people – and now I know who they are, but at the time, if you were to ask me that night when I went home, I had no idea my own name!

But it was just going over what to expect, everything from the emotions we would have, to how long the surgery would be, to exactly what the surgeon would be doing, a lot about the whole donor process – I knew that I could be a potential donor, but they explained the differences between living donor and deceased donor. Like I said, a lot of blood-work, a lot of scans, Hannah went through a chest x-ray, an MRI, ultrasounds…so it was a pretty comprehensive day.

[Later] That was probably one of the harder days of the whole process, I would say, because it was just really overwhelming. The social worker we were connected with through the PTC was phenomenal, she really helped us a lot. And then immediately I went home and connected with one of these families we had been connected with prior, and the mother just talked me through and said, “That is the most overwhelming thing. From here it’s going to be that much easier.”

So I guess just reaching out to another family who had gone through it, to say, “Is this what my life’s going to be like for the next few months?” And it was that reassurance that, no, this is the worst, it’ll get better.

Mother of Hannah, 4

 

transplant_liver_green Getting listed
It was actually fairly easy. We met with the liver clinic, and it was a long visit. We met with the social workers and the nurses and had a bunch of tests done, and then had to meet with Infectious Disease, and cross all of the t’s and dot all of the i’s and just make sure everyone was healthy and okay. It was just an interviewing process and just making sure he was going to be healthy enough.

Mother of Noah, 5

 

transplant_lung_blue One thing done at a time
There were a lot of tests that had to be done to make sure he was able to survive the transplant, because there are a lot of things that could go wrong. And even after the transplant there are still things that could happen that could affect the new lungs, so they had to make sure everything was going good.

It wasn’t all clustered together, it was kind of spread out. He had to go see the dentist, he had to go get his bones scanned, and he had to get blood work done, he needed his sinuses looked at, just different things like that. So everything was done, but not all at the same time.

Mother of Austin, 9

 

transplant_heart_red Okay, I’m ready. Let’s do it.
We actually started the process two years before, when she was 11. There was something going on with her lungs and that’s why: the heart function was still manageable, but they said, “We have to take care of the lungs. We can’t let them go, let them get ruined.” So she did the entire evaluation process, which was really stressful, really put everything front and center and made people talk about it and deal with things. And it was hard, because people that we weren’t super friendly with would say, “She looks so great! Why are you doing a heart transplant? That doesn’t even make sense.” And it made us question, “Why are we doing this?” Because you know, you can’t see anything and if you don’t know how to read the ECHOs, it’s like, really? So right at the very end, the last test that they redid was pulmonary, and all of a sudden, whatever was wrong with her lungs was gone! And we were like, “Okay, that’s really weird.” So they backed off and said, “We’re not going to list her.”

We got about halfway through the next year, and I’m like, “She’s off…here we go.” So when we came in for her appointment, they said, “Yeah, it’s time.” And part of that was knowing that you got to build in enough time to wait. So the second evaluation was a piece of cake, because they’d saved a bunch of the test results so we didn’t have to redo them, and she’d had two years to think about it and was like, “Okay. I’m ready, let’s do it. And then we just waited – you know, came in for those once a month appointments, and started school.

Mother of Eva, 13