Jennifer Garigan - phaware® interview 265

Jul 19, 2019

Pediatric pulmonary hypertension caregiver Jennifer Garigen discussed her son Tyler's PH diagnosis, the importance of a PH Care Center and offers parenting tips for siblings of rare disease patients.

I'm Jennifer Garigan and I'm a pulmonary hypertension caregiver.

Our son was four at the time [he was diagnosed] and he showed no symptoms, no signs whatsoever, and just got a respiratory virus, so we went to the hospital. His oxygen saturations were in the 80s and they sent us to the emergency room. After two days in the hospital, we thought we were going to be told that he had pneumonia. Then, all of a sudden, there were eight or nine doctors in the room and we were learning about something called pulmonary hypertension that we'd never heard of in the past. We were very lucky that we got diagnosed right away before there was too many symptoms. We're also very lucky that we have a PH care center within 20 minutes of our house and a great specialist who has guided us through the process.

We were first seen by a cardiology specialty team, where we didn't get connected with the PH specialist right away. It took us about eight months. Working with cardiology, we were told that, as of right now, your son just can't play sports and needs to take it easy. [The cardiology team said that he] can't do anything athletic, which in its own respect was difficult enough to swallow. My husband built his career around sports, so it was something that we always wanted our children to be able to participate in. Our son at four was more athletic than I am still to this day. So that was a bit of a shock, but then when we got connected to Dr. White, who is actually an adult PH specialist but has a certification in pediatrics, he really explained what the disease actually is, what we can expect and helped us get aggressive, so that we could slow the progress of the disease.

It's been a journey, for sure. When we first learned really the magnitude of PH, it took a while for that to sink in. Our son does not like us to tell anybody that he has PH, he doesn't want to be different. I'm a support group leader locally, but he's really the only child at the meetings when he is able to attend. At one point, I found him crying underneath the table. He said he didn't want people to know that he had PH, even in a support group type of setting. So, he's definitely had some emotional pieces.

Our younger son is full of energy, he's six and he's definitely said, "Oh, I wish I had PH," at certain times and it's terrible to say this, but he has asthma. He had some of his own medical issues. I think he almost was happy about that because he got the special attention that big brother had gotten too. But luckily, that has passed and he is much better and we're working through that as a family in general.

We couldn't sit still. My husband and I, neither of us have a medical mind necessarily. Those are the classes in school that I hated, biology, chemistry, all of that. We started a walk. We have a great committee that helps and now it's really more of a full support group network versus just our family and friends. It helps build awareness locally and just build a sense of community. When we were first diagnosed or told about PH, we felt so alone and that there was really nobody else close to us. We don't ever want our son to feel that way, so building a community around him has been very important to us. I think we got very lucky being diagnosed as quickly as we did and hearing other stories about ten years of being diagnosed with the asthma or not getting the right treatments is very difficult to hear.

I recently met a woman in our area that got connected to our group after her husband passed away. The day before he died, he was diagnosed with pulmonary hypertension. Hearing her story, it was just chilling because everything that her family said and the doctor said, for 20 years this poor man suffered. And then not until the day before he died did they acknowledge that, "Hey, we could have actually treated this if we would have diagnosed it." That made a huge impact on me. I would say, find a network, and if you don't have one, build one. We've had a lot of success with just talking, telling people that our son has PH. When you get those people that ask the right questions or that take it seriously, you know that they're are potential people that you can rely on and that can help you through the process.

I also had someone early on tell me to tell our son that having PH wasn't his fault and I'd never thought to do that. One night before bed, I mentioned, "Tyler, having PH isn't anything that you did wrong. It's not your fault. It's something that happened to you," and he just started sobbing. Obviously, that was something that he'd been thinking that I had never even acknowledged might be a potential issue with him. Definitely, make sure that your child knows it's not their fault. With the other siblings, make them part of the care, help them understand and get some alone time with both your PH-er and your non PH-er.

I'm Jennifer Garigan and I'm aware that I'm rare.

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