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Learning a New Rhythm on My Journey With PAH

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Navigating a pulmonary arterial hypertension (PAH) diagnosis can be challenging. That is why we partnered with Janssen to share first-hand stories from people living with PAH who have worked closely with their healthcare team and have been prescribed UPTRAVI® (selexipag). We hope you find inspiration in the shared experiences of these patients and healthcare professionals.


<p><strong>EMILY:</strong> My name is Emily. I work in healthcare here in Nashville, but I&#8217;m sharing my story with you as a person with pulmonary arterial hypertension, or PAH.</p> <p>Thirteen years ago, I married Brad, and now we&#8217;re raising two little girls, three cats, and 12 chickens.</p> <p>Our dream moving out here four years ago, was to have some land, to have a garden, and to have chickens. Just a few months later, I was diagnosed with PAH.</p> <p>I&#8217;d just had my youngest child, and just kind of knew that things were not right but couldn&#8217;t quite put my finger on it. Doctors would say, &#8220;You just had a baby so you&#8217;re just tired,&#8221; or, &#8220;You can&#8217;t climb that flight of stairs because you haven&#8217;t lost your baby weight.&#8221;</p> <p>We could attribute my symptoms to other things, but my gut said something&#8217;s not right. But I didn&#8217;t give up. I found a doctor who really listened. My doctor got the feeling that something was not right. My EKG wasn&#8217;t normal.</p> <p>She sent me to a cardiologist who performed my echocardiogram. Those results sent me to a pulmonologist. I have a fantastic relationship with my pulmonologist.</p> <p>We work together in managing my PAH. Brad and I keep life moving together.</p> <p><strong>BRAD:</strong> When Emily was first diagnosed, it was scary, and I was uncertain of what that diagnosis meant. We went to all of her appointments together. She included me in everything. You know, there&#8217;s not a day that goes by that I don&#8217;t think about how she&#8217;s doing at work or at home if I&#8217;m not around.</p> <p>Your mind can wander and sometimes it can wander too far, and you can scare yourself. She means everything to me.</p> <p>Not knowing what the future holds is hard, but taking it day by day helps us. But I see her struggle on her worst days. She&#8217;s always there beside me and tells me she&#8217;s okay, even though sometimes she&#8217;s not.</p> <p>When we go out on a short walk with the kids or I watch Emily play with them or garden, I make sure to pay attention, and sometimes I see that she stopped walking. It&#8217;s just noticing the little things and saying, &#8220;Okay, this is making her tired,&#8221; and slow down.</p> <p><strong>EMILY:</strong> I couldn&#8217;t manage all of this without Brad. We had to figure out how to make our dreams still work in the day to day, while still managing my PAH. Working, being a mom—all of that is a struggle. But we found a really nice balance dividing and conquering and making life work.</p> <p>When my four-year-old wants me to pick her up, Brad will swoop in and pick her up. I don&#8217;t always have a lot of energy to give them.</p> <p>Having PAH is hard raising two kids; just getting them ready and out the door is tough. Many times, I talk about what my dreams are, and Brad helps me make them happen.</p> <p>And it&#8217;s a success because we do it, and that&#8217;s what I want life to look like. That means being really open with my doctor. She knows I&#8217;ll call her if I have any concerns.</p> <p>She wants to help, but she can&#8217;t do that if she doesn&#8217;t know what&#8217;s happening. We talk about how things are going, what life looks like. Life doesn&#8217;t stop when you have PAH.</p> <p>I&#8217;ll tell her how long I was able to work that week, and how I have been feeling, how many steps I tracked each day, whether I&#8217;m able to garden, if I can care for my chickens, and most importantly, if I can take care of my girls. The ability to do these things, even if it&#8217;s challenging, means a lot to me. The day that I can&#8217;t do some of these things will be a different conversation.</p> <p>It is important to me to do what I can do and recognize it may be at a different pace. I see my doctor regularly, and we evaluate how I am doing at that point and what life looks like.</p> <p>The goal is always to take care of and monitor my health.</p> <p>I started UPTRAVI<sup>®</sup>, or selexipag, a few years ago.</p> <p><strong>NARRATOR:</strong> Do not take UPTRAVI<sup>®</sup> if you take medicines like gemfibrozil because these medicines may affect how UPTRAVI<sup>®</sup> works and cause side effects.</p> <p><strong>EMILY:</strong> My doctor said UPTRAVI<sup>®</sup> had been shown to help delay or slow down the progression of PAH and help lower the risk of PAH-related hospitalizations.</p> <p>It&#8217;s important to me to delay disease progression, and I really appreciate the convenience of an oral medication. My doctor reviewed the Important Safety Information with me and we discussed that I should tell her if I&#8217;m experiencing any side effects, such as reddening of the skin, headache, nausea, or vomiting. Also, if I am pregnant or planning on getting pregnant.</p> <p>My hope is that I am able to continue to work and to care for my children. And sometimes that means making compromises in life.</p> <p>Sometimes when friends want to go walk and get together, I just can&#8217;t quite do what everyone else does. And that&#8217;s okay. Life looks different for me, I move at a different pace. But I&#8217;m still moving and I&#8217;m still walking.</p> <p>And I&#8217;m still having life look like what I wanted it to look like, My kids want to play in the yard, they want to go and do activities like go to the park or beach.</p> <p>My kids know that my lungs aren&#8217;t great. They know that I have to take medicine.</p> <p>They know that I have to wear oxygen at night. They see that their mom has to have those things. It takes a while to find a new normal, you miss what you thought life would look like.</p> <p>A big part of life with PAH is the learning curve. It can be a hard learning curve to be a good patient and follow the treatment regimen that my doctor and I developed.</p> <p>There&#8217;s so much to know, there&#8217;s so much new terminology. The tests are new, the choices are new, the medications are new. It all is so very much to take in at one time.</p> <p>It&#8217;s almost like you need an interpreter to help you walk through and break things down for you. It&#8217;s a lot to process. It&#8217;s almost like its own language, its own world.</p> <p>I would say that there&#8217;s a large communication gap between patients and physicians or providers. It&#8217;s a new work for patients.</p> <p>&#8230;you&#8217;re unsure of the new normal, you&#8217;re unsure of what life might look like, what things are expected, what things are worth reporting.</p> <p>I know someone else who was diagnosed with PAH recently. She says she knows that things aren&#8217;t feeling right, that things are off for her.</p> <p>You learn certain things that are normal for you and other things are abnormal for you. And they&#8217;re all worth reporting and noting.</p> <p>You&#8217;ve got to communicate all that to your doctor. They can&#8217;t help you if they don&#8217;t know.</p> <p><strong>BRAD:</strong> The advice that I would give anyone who has a loved one that has PAH is to have a stop and smell the roses mentality. Slow down the pace of the family so someone who isn&#8217;t feeling well still feels included and is able to participate. Our focus has shifted to what is important—being able to do things together and enjoy time together. Because the most important thing is to be with the ones you love.</p> <p><strong>EMILY:</strong> Part of living with PAH is learning a rhythm. You learn what your new normal is going to look like. I think the more information you have, the more peace it brings.</p> <p>There&#8217;s a lot to know, and this is definitely a journey, but I think my family and I are going on the right path.</p> <p>Emily is partnering with Janssen to share her story. She has been paid for her time. Individual results may vary. Please consult with your healthcare team for treatment and medical advice.</p> <p>cp-186148v2</p> <p>Actelion Pharmaceuticals US, Inc. is part of the Janssen Pharmaceutical Companies of Johnson &amp; Johnson.</p>
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