Hi, welcome to another episode of PEP Talks, a video and educational program hosted by the Alliance for Pulmonary Hypertension. “PEP” stands for “Patients Empowering Patients”, because no one understands this journey better than those who are managing it daily.
Hi, I’m Jen Cueva, a proud pulmonary arterial hypertension patient diagnosed in 2005. I’m fortunate to live in San Diego, California, where the sun shines beautifully and the ocean breeze fills the air. I share my life with a wonderful, supportive husband who stands by me through each and every challenge. I’m a proud mom to an amazing daughter and also her biggest fan—enthusiastically cheering her on as she embarks on all of her many adventures.
My journey has been filled with many ups and downs, but I cherish each moment of love and support surrounding me.
What do we do when we have setbacks? I’ve participated in numerous advocacy efforts, notably with the Pulmonary Hypertension Association. I share my experience in my bi-weekly column and as a forum moderator for Pulmonary Hypertension News. Additionally, just since last year, I’m also grateful to have become a published author in a book called Positively Rare, which showcases stories from individuals affected by rare diseases. This book is available on Amazon in most countries.
I’m so happy that you’re here today. I hope that something in today’s episode resonates with you and you feel encouraged, understood, and empowered to keep fighting.
Today’s episode is meant for anyone who feels they’re a bit stuck, discouraged, or simply worn out—mostly those living with or caring for someone with pulmonary hypertension. Perhaps you had specific goals in mind like eating healthier, getting more sleep, or moving around more each day. But sometimes, pulmonary hypertension has a way of surprising us. Does this resonate with you?
Living with pulmonary hypertension means navigating the ups and downs many others can’t always see. Perhaps you recently struggled through your six-minute walk test, or your pulmonary function test didn’t go as well as you had hoped. This can be tough and frustrating. But here’s an important message I want you to hear: a setback isn’t a failure. It may mean your treatment plan needs a minor adjustment. Maybe additional treatments can be added by your pulmonary hypertension team. Or maybe it was just a bad testing day—believe me, we all have them.
Let me share something personal. My nephrologist—kidney doctor—recently expressed concerns about my weight loss. Managing both chronic kidney disease with pulmonary hypertension is quite the challenge. Gaining weight seems simple for most people, but it becomes complicated considering dietary restrictions, severe fatigue, and various other factors. It can be discouraging, and it’s a reality I face often. When these challenges pile up, it’s easy to feel like I’m failing or falling behind.
But here’s what helps me shift that mindset: allow yourself some grace. We’ve been through so much, but we rarely recognize this. We easily show kindness to others and forget to offer it to ourselves. I’m still learning this, and it’s a continuous work in progress.
Rest is not a weakness. Managing pulmonary hypertension, believe me, is beyond exhausting. If your body’s asking for a nap—please take it. Honor your fatigue. Learn to listen to your body better. It’s all about taking better care of yourself. Recharge—even in small ways. I find a few minutes outside, a breath of fresh air, sunshine, time with family or friends, or going to the beach (which is my happy place, as you can probably tell) really helps. Some stretching, gentle movements, deep breathing—each of these little efforts are tiny, but can make a huge difference in your mood and stress levels.
Lean on your people and your support system. Many of my family, friends, and pulmonary hypertension friends notice when I hit a low point. They don’t try to fix it—they show up. They check in on me. And when I’m ready, I can connect with them and talk about my struggles. That helps.
Regular check-ins with your therapist also help. Let’s face it—this is such an emotional journey. Knowledge is power. Gaining a better understanding of how various health conditions—like my chronic kidney disease—and other coexisting issues influence your overall physical health is crucial. That knowledge not only empowers us, but it helps us anticipate and look ahead. Be proactive in any potential challenges that may arise. It equips us with more tools to respond and adapt.
Remember: knowledge is power. The more you learn about the factors affecting your health, the better prepared you are to manage them effectively with your PH team.
But if anything at all, just remember this: you are so much more than your pulmonary hypertension or any diagnosis. Setbacks do not define you. They’re just chapters—not your whole story.
Brighter days are ahead. Keep showing up for yourself. Keep leaning on your support system.
Keep learning. Keep listening to your body. Keep resting. And keep fighting.
Thank you for spending time with me today. If this episode resonates with you, please share it with a friend or someone in the pulmonary hypertension community who might need to hear these words. Remember, your pulmonary hypertension journey is uniquely yours, and every step forward counts.
I’m grateful to the Alliance for Pulmonary Hypertension for this opportunity to participate in this educational program. Take care and make it a great day. Thank you.