Real UPTRAVI® Patients
Real Hope
MEET REAL UPTRAVI® PATIENTS
WALK WITH JENNIFER
After advocating for an oral therapy and finding her personal dose, Jennifer found hope for her future with UPTRAVI®.
I am the mom to two amazing girls...I am a friend,
and I am a PAH warrior.*
View Transcript
JENNIFER: It’s not just about surviving, it’s about finding those moments that bring you joy.
I remember those first symptoms, and I remember that day. It was the Tuesday before Thanksgiving and I had gone to pick up a pie, and I was walking home and I thought, man, this pie is really heavy. Why is this pie so heavy? Why am I struggling to walk five blocks and why am I having chest pressure? I didn't understand it.
Going from symptoms to diagnosis was hard. The doctors told me there was nothing wrong with me. I couldn't stand up. I was struggling to breathe, but they told me to go home. So I did. It was after that when my husband looked at me and said, “Your lips are blue. I'm taking you back to the emergency room.” We went to urgent care. That's when they did an EKG and they said, “She’s having a massive heart attack. We need to send her back to the emergency room.”
Advocating was super important, and I should have done it better the first time. I shouldn't have let them send me home from the emergency room.
When I had the diagnosis, they were really pushing IV and subcutaneous meds, but I knew that didn't work for my lifestyle. My daughter was two, she lived on my hip. A tube would've been pulled out.
We were constantly going somewhere, constantly on the move. I needed something that I could just throw in my bag, take it, and go.
I learned from my doctor that the prostacyclin pathway was important in PAH and I knew I wanted to be on an oral therapy and that's why we chose UPTRAVI®.
Because UPTRAVI® is a pill, I can easily take it with me wherever I go. I don’t need to worry about traveling with pumps or needles or other equipment.
The UPTRAVI® support programs didn’t exist when I was first diagnosed and when I first started taking UPTRAVI®, but it would've been amazing if they had just so I wouldn't have been on my own.
There's dedicated one-on-one support for patients through PAH Companion withMe. That one-on-one support could have really helped educate me on what to expect.
I knew UPTRAVI® would have side effects, but I always thought to myself, no pain, no gain. I started at 200, worked my way up to 400, got to 600, and had to stop.
I called my doctor and I said, “I can't do this.” And he said, “Oh, why didn't you call me sooner? We can titrate you down.” It was then that I realized that your personal dose is what will work for you.
I understand that J&J withMe now has a nurse titration program. That would have been super helpful to me as we found my personal dose.
I've been on UPTRAVI® for nine years and it's slowing the progression of my disease.
It's also helped keep me out of the hospital. I still have hard days, but I'm able to watch my kids grow up, travel with them, and go to their events.
I love going for a walk in Central Park when it's 75 and sunny and I can listen to my—I'm dating myself—eighties and nineties music.
And just breathe and look at the trees, whether it's the spring blossom or the fall leaves, it's one of my favorite things to do. And when we're out of the city, I love getting on the golf cart with my girls and just driving as the three of us sing at the top of our lungs, heading to the lake or to the pool or even just to find some swings.
The advice I would give someone who's just been diagnosed with PAH is to never, ever give up. There is hope. There are treatment options, there are support groups. There are so many valuable resources that you can access, that provide so much insight.
When I was diagnosed, they told me I wouldn't live to see two years. I wouldn't live to see 40. I'll be 50 in a year and a half. I have so much hope to watch these little girls become strong, confident women. I have so much hope in their future, not just mine. And every day I work and put one foot in front of the other just so I can see them grow up, see them turn into these amazing human beings that I know they're gonna be.
I am the mom to two amazing girls. I am a speech language pathologist. I am a friend, and I am a PAH warrior.
WALK WITH LINDSAY
Lindsay knew she wanted to be on an oral therapy so she could continue doing what she loved; that’s when her doctor recommended UPTRAVI®.
My doctor told me that I could expect some side effects... but the slower titration schedule really made it
more manageable for me.†
View Transcript
VO: Alright Lindsay, can you just tell me the story of like, when you first noticed your symptoms, first time you noticed something was wrong?
LINDSAY: When I first got this diagnosis, it was incredibly overwhelming.
I am diagnosed with PAH, which is Pulmonary Arterial Hypertension.
The first time that I noticed that something was wrong was when I was walking up a flight of stairs because I was packing up my apartment and I'd been carrying a lot of heavy boxes. And when I got to the top of the stairs, I noticed that I was really out of breath, more out of breath than I felt like I should have been.
I was convinced that I was just out of shape. It never crossed my mind that I should even go see my doctor.
So, I actually only ended up going to the doctor because I needed a new doctor when I moved to Texas. And while I was there, he listened to my heart just in a normal checkup and he said he heard a heart murmur. So they sent me off to get a test.
The next day they called me and said they suspected the pulmonary hypertension.
After my first visit with my first specialist, the lady on the phone told me that everything was fine, nothing was wrong with me, and I should just go live my life. I thought it was really confusing because I was still having trouble breathing, but I was 23. I didn’t know any better.
But over the next three or almost four years, I was getting worse and worse. My breathing was getting more labored, and I actually started passing out, which that was pretty clear that I needed to go back to the doctor.
It was incredibly frustrating because that means that I went without any treatment or help for close to four years.
I remember reading online that, back then, life expectancy was just 2.8 years without treatment.
I first considered UPTRAVI® because my doctor recommended it to me and I really trust him.
I really wish I'd started UPTRAVI® sooner because the prostacyclin pathway is an important part in treating PAH.
Being on oral medications and staying off of a pump has been one of my goals from the very beginning. Two of my most favorite things to do are to swim and to take baths, and that would be really difficult for me to be able to do if I was attached to a pump all the time.
Back then, I wasn't really good at telling my doctor things right when they started happening. And I wish I'd been better at communicating because I really think it would've been better if I could have gotten on it at least just a little bit sooner.
My doctor told me that I could expect some side effects, so I knew it was coming, but the slower titration schedule really made it more manageable for me.
They gave me a lot of really helpful information, like the titration education program, where a nurse came and really explained to me how the process works. She explained that I could go at a slower pace, and then I didn't actually have to get up to the 1600 micrograms. I could just find a dose that worked for me.
I really think it was worth it for me to stick with the titration phase to be on oral therapy with UPTRAVI®.
I've been on UPTRAVI® for seven years, and before that I was in functional class three, which means that I couldn't even walk on a flat surface without having to stop and catch my breath.
Since 2020, I haven't been readmitted to the hospital and the progression of my disease has slowed down, which has been great.
I can take my dogs to the park, I can play with my nieces, basically all the stuff that I love to do.
And it's really changed the way I think about the future. I used to always set these goals for myself, you know, I wanted to make it to 30, then 35, and I actually recently just turned 40. And now, rather than having these arbitrary five-year goals, I really just wanna see my four nieces grow up and meet the people that they're gonna become.
My doctor works with a really great team and they encouraged me to take an active role in developing my treatment plan.
Another thing that really helped me was the support groups with the other patients. I got a lot of really helpful insights from people and their experiences living with PAH, and that was just invaluable.
I think that everybody living with PAH should have hope because life is amazing and without hope, you know, that's a really heavy load to carry.
I've often felt like hope is a choice, and it's one that has really helped me maintain a positive outlook on life and being able to, you know, focus on the good things and enjoy life, enjoy the little moments and not pay so much attention to things that may be difficult or hard, but just enjoy all of the wonderful things that life has to offer.
HEAR FROM MORE PATIENTS
EMILY’S PAH STORY
Emily was able to delay PAH progression and gained the confidence and freedom to be there for her family with the help of UPTRAVI®.‡
View Transcript
Emily: Hi, I’m Emily and I’m living with PAH.
Emily: The day I was diagnosed, I feel like was a blur. I wish I had had someone in the beginning, kind of a fairy godmother that had been on my shoulder just saying, there is life after diagnosis.
Emily: I arrived at my current treatment plan with UPTRAVI®. Change is hard sometimes, so introducing a new medication is…can take some thought. A doctor and I talked about UPTRAVI®, discussed it, decided it was a good option for me.
Emily: When I hear a medicine can delay my disease progression, it gives me confidence. It has allowed me to still make life look like what I would like it to look like and to do life on my terms.
Emily: By being on oral pills It’s a lot easier to travel, to prepare my medicine to take with us, which allows me the freedom to be with my family.
Emily: I would say to really find a cheerleader that stands with you in the hard stuff and pushes you within limits as well.
Brad: My name is Brad, I’m Emily’s husband. We’ve been together for 20 years.
Emily: Kind of the first the photo of the two of us.
Brad: That was the first photo of the two of us.
Emily: Yeah. Yeah.
Brad: Very good memory to look back at that. The chain not so much, the rest yes.
Emily: In a lot of ways, Brad is what makes my world, our world as a family, go round. So, Brad helps me to move in such a way that I can enjoy life but still at my own pace.
Brad: Realizing that, with us trying to balance, we’re able to enjoy life more because if you’re going too fast, we miss, we miss the small things. We miss the moments.
Emily: I push through because there is the face of two little girls at the end and I can do it for them, and I can do it for me.
Emily: My name is Emily and I stop at nothing.
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