They couldn’t figure out why
It was a long process. I’d say the first year was really hard because Austin was still being hospitalized a lot, because his lungs would fill up with fluid right away and they couldn’t figure out why. He wasn’t having rejection and he wasn’t having trouble with anything else other than just the liquid filling up.

A little bit more than a year after his transplant, they found out he had something wrong with his pulmonary veins, so they had to fix those and then after that he was all right – they ballooned him and put stents in because his veins were just small and narrow, so they had to make them better.

Mother of Austin, 9

 

What caused the damage in the first place
She went through four-year-old preschool without any problem, kindergarten without any problem, and then in the spring of first grade, her pulmonary function started to decline at a really rapid rate, just out of the blue. We really didn’t have any forewarning at all. It was just like all of a sudden she couldn’t run around anymore, and she was tired all the time, and she couldn’t eat, she was vomiting a lot, she had a lot of reflux.

We flew up here and she was admitted. They did a bronch and diagnosed her with bronchiolitis obliterans

They admitted her, they diagnosed her, and they felt that she would possibly benefit from fundoplication surgery to kind of stop the reflux; I think they felt that’s probably what caused a lot of the damage in the first place. Apparently that’s common in lung transplant patients: because of all the medications, the acid reflux comes back up the esophagus and they actually aspirate it into the lungs, because there’s not as much sensitivity there to kind of cough and not let it go into the lungs.

Mother of Laura, 14

 

Trading one can of worms for another
So far, so good. We’ve had a couple bumps in the road, but that’s kind of the life of transplant living. It’s a treatment, not a cure, so you trade one can of worms for another. She was re-diagnosed with bronchiolitis obliterans, so we went through photopheresis treatment. She did very well; in fact, here we are a year and a half out, and her PFTs at this point continue to go up, so obviously it did what it needed to do and stabilized her! She’s in the 8th grade and plays softball…her health lately has been very good.

Mother of Laura, 14