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Teens and Young Adults With Pulmonary Hypertension

Being a teen means figuring out who you are and gaining more independence — but living with pulmonary hypertension can make everything more complicated.

Many teens with PH talk about looking and feeling different. Some feel different because of the medications and side effects they’re dealing with. Some get out of breath in gym class when everyone else is just warming up. Some worry about fitting in because they can’t play on the soccer team or try out for cross-country. The pressure of trying to fit in with classmates can be a source of stress. 

Things that everyone else gets excited for can be harder to plan for if you have PH. Shopping for clothes and make-up can be trickier if you need to think about a pump, facial flushing or a surgery scar. Even going to the prom may mean convincing your parents to stop worrying enough to let you stay out late with friends for one night.  

Lots of teens are looking to find a balance between their “PH life” — symptoms, medications and doctors’ visits — and their high school life — school, parties and friends. 

Teens with PH deal with a lot of change. Plans need to be adapted to accommodate your PH. You’ll be transitioning to an adult PH doctor and taking on more of your medical responsibilities, from managing your medications to ordering prescription refills. 

You’re at a point in life where you want to make your own decisions and explore new freedoms. 

Balancing family, independence and health  

Teens like Becca, 19, know how hard it is to gain freedom when parents are worried: “With us it’s just a bit more complicated,” she says.  

Parents may check in more, monitor meds or limit activities. That care can feel overwhelming, even as it comes from love. Finding balance is key — asking for space or accepting help when it’s truly needed. 

Kiah, diagnosed at 10, shared: “Balancing your parents’ fears and preparing yourself for facing obstacles on your own is hard.”  

And she’s right — learning to negotiate, advocate and prove responsibility takes practice. 

Some teens feel burdened by family stress. One teen worried: “Will my parents have to sell their house just to cover my insurance?” These concerns are heavy. If they come up, talk about them — your parents may have answers or plans that help ease your fears. 

Prove your independence

Want more freedom? Start by showing you’re ready for it: 

  • Know your meds. Learn the names, dosages, and what they’re for. Track when you take them and how they affect you. 
  • Speak up at appointments. Talk to your doctor directly about symptoms, questions or concerns. 
  • Take on tasks. Whether it’s mixing medications or calling in a prescription, showing responsibility helps build trust. 

Small steps lead to big trust. Let your parents see that you’re ready to handle more. When you want to go out with friends, think ahead: 

  • Will you need to take meds during the outing? Do you need to set an alarm? 
  • Do your friends know about your health needs? 
  • Do your parents trust you to say something if the activity isn’t safe for you? 
  • How will you handle a situation if you start feeling unwell? 

Present your plan to your parents. Show them you’ve thought it through. Offer to check in by text or call during the night. The more consistent you are, the more likely they are to loosen restrictions over time. 

Look toward the future 

It’s natural to think about your next steps: college, jobs, moving out. But your parents might not be ready to think about that yet. Talk with them early and often.  

“Be open with your parents about what you want your future to look like,” says Anna, 15. “They need time to adjust.” 

Be realistic with your goals and flexible with your plans. Some days will be easier than others. Share your dreams, and let your parents help you make them happen safely. 

Don’t hide symptoms or downplay how you’re feeling. When you’re honest about tough days, your parents will likely trust you when you’re ready to take on more responsibility. 

Siblings: Built-in support (and tension) 

PH affects sibling dynamics. Younger siblings may feel jealous of the attention you get, while older siblings may try to act like a second parent. And you might feel left out watching them live a more typical teen life. 

Kiah recalled, “Sometimes parents give more toys, gifts and time to the sibling with the illness and this can cause jealousy.” That can go both ways — you may feel like your healthy siblings get to do all the fun stuff without restrictions. You might feel guilty when you notice your parents stretching themselves thin to care for you. 

Honest conversations can go a long way. Ask your siblings how they’re feeling. Be open with them about what you need and when you’re struggling. You might be surprised how much stronger your bond can become.  

Strengthen sibling bonds 

Even if your siblings don’t totally get what you’re going through, they can still be a huge support. Share regular, everyday moments. Ask about their days, play a game, or watch a show together. That builds connection. Be honest if they say something that hurts. And be open to hearing the same from them. Everyone’s adjusting. 

Expect arguments. It’s part of growing up together. When things go wrong, apologize, forgive and move forward. Siblings often become lifelong friends, especially when they’ve weathered challenges together. 

Stay open, stay you 

You are not just your diagnosis. You’re someone with a future, opinions, and goals. It’s OK to ask for more freedom and to ask for help. Be patient with your parents. Be kind to your siblings. And be gentle with yourself. 

PH is part of your life, but it doesn’t define all of it. With clear communication, consistent effort, and a willingness to grow, you can create stronger relationships and shape the life you want. 

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