Lungs

Cystic fibrosis
We found out Austin had health problems when he was born, pretty much. There were a few complications in the beginning, the first couple of weeks, and they did some testing then found out he had CF.

I was scared, because I didn’t know what it was…confused, basically. We were talking to doctors, and they gave us some pointers on how to take care of him, and that we would be seeing them a lot. They gave us an outline of what CF is and stuff like that: what to avoid, and what he might be like when he’s older…Then he ended up getting sick. He had RSV, which put him in the hospital, and he ended up living in the hospital from March until October that year.

Mother of Austin, 9

 

I want to have RJ screened
My husband was diagnosed with pulmonary hypertension first. About one month after his dad was diagnosed and put on treatment, his brother Daryl collapsed at school during recess. When he was brought to the ER at Children’s after a head CT and an ECHO and all of that, I was told that there was some concern that he may have pulmonary hypertension.

So that was in April or May when my son collapsed. And then we didn’t screen RJ until September, just because during that time, we were still getting Darryl on medication and having constant visits at the Cardiology clinic. But then when Darryl was stable…and we also did some genetic testing: Children’s had a genetic counseling program at the time, so they did some genetic testing, and it seemed clear that it was a genetic issue. So then, at that point, I said, “Well, I want to have RJ screened.”

[Later] He indeed had signs of pulmonary hypertension and needed further medical workup. I was very, very sad. Very sad, very depressed, very confused, upset. It was not a good time…

Mother of RJ, 12

 

Nobody was believing her
During her freshman year of high school, that was when it started. She didn’t want to go to school, because she had no energy…She was rapidly losing weight. She wouldn’t eat, she slept all the time, she didn’t have energy. And they just kept telling us it was asthma, asthma, asthma. And then they couldn’t find anything physically wrong, so that’s when they started trying to call it emotional stuff…Me and her father and just gone through a divorce; it was a really difficult time for her. A lot of what they said made sense…and she was getting frustrated too, because she felt like nobody was believing her.

Mother of Jess, 18

 

By the next day we knew
In December she tested positive for a blood clot in her lung, but they couldn’t find it. They kept her in the hospital for like three days that time, and they treated her with Coumadin and then they sent her home… In May of the following year, I went to Canada…by the time I got back two days later, she couldn’t walk. She was all blue and she was hunched over and they thought it was a gallbladder attack. The same doctor was on in the OR who happened to be there in December, so she said, “I’m not sending you home. We’re sending you to a bigger hospital.”

We finally get her there, and they admitted her to ICU… [A few days later] They life-flighted her to Boston. I drove, but my sister actually came from Connecticut and stayed with her while I drove down. By the next day we knew that she had pulmonary hypertension.

Jess, 18, and mother