As you begin your treatment journey, it’s important to remember that there are others who are on similar paths. myJourney shares real-life patient stories to provide you with insights that might help.
Adempas is approved to treat adults with:
-
Chronic thromboembolic pulmonary hypertension (CTEPH) (WHO Group 4) treated with surgery but who continue to have high pulmonary blood pressure (persistent) or it comes back after surgery (recurrent), or that cannot be treated with surgery (inoperable)
-
Pulmonary arterial hypertension (PAH) (WHO Group 1)
The Adempas clinical studies included mostly patients with WHO functional class II-III symptoms. It is not known if Adempas is safe and effective in children.
WHO=World Health Organization
Lauren’s journey with PAH
Lauren, a nurse from Wisconsin, has always had an adventurous, curious spirit. Her passion for traveling has taken her to many far-flung places.
Despite maintaining such an active and healthy lifestyle, at age 21, Lauren was faced with an obstacle that challenged her ability to take part in all the things she loved.
During a trip to South Korea, Lauren experienced symptoms that affected her at non-specific times.
“I brushed it off and blamed it on the increased altitude. I figured, ‘I’m healthy, I’m 21, nothing is going to happen to me.’”
Although Lauren looked past these warning signs, she soon realized something more was going on after a fainting episode that sent her to the emergency room.
Lauren received an echocardiogram, and a diagnosis of pulmonary arterial hypertension (PAH) (WHO Group 1) was confirmed by a right heart catheterization.
“You hear all these stories of people who go years being undiagnosed, and with one event, I had an immediate diagnosis. I was lucky.”
“I figured, ‘I'm healthy, I'm 21, nothing is going
to happen to me.’”
After Lauren’s diagnosis, her doctor immediately initiated her first PAH treatment. “It was not easy trying to balance both my studies and my PAH. I had to adjust to a lifestyle that was different from what I was used to.”
After a couple of years of treatment, Lauren’s doctor spoke with her about starting a new therapy strategy with Adempas, informing Lauren about the Adempas REMS program and risk of embryo-fetal toxicity.
After opting in, an Aim services nurse, provided by Bayer, was sent to Lauren’s home to offer support and guidance (in consultation with her doctor) throughout the therapy transition process.
“I had to adjust to a lifestyle that was different from
what I was used to.”
Because Lauren experienced symptoms of low blood pressure when starting treatment with Adempas, her doctor decided to lower the dosage and monitor her. Soon, they were able to increase her dose and ultimately find what worked best for her.
“It took about 6 months to get to where I am now with Adempas, comfortable and feeling an improvement in my exercise capacity.”
Adjusting to a new lifestyle with PAH is no easy task. For Lauren, it took time to understand her diagnosis and what her care looks and feels like.
Lauren strongly believes in being your own advocate as a patient—learning from your doctor about what the right treatment options are for you, and keeping an open line of communication about how you are feeling.
“You have to take things one step at a time and set realistic goals for yourself. If your goal for the day is to walk out to the mailbox and get the mail, that’s perfectly ok!”
“You have to take things one step at a time and set
realistic goals for yourself.”
Lauren also feels her experience with PAH has provided her a framework in offering support to those living with this condition.
“My career as a nurse is centered around helping others. Having adjusted to a life with PAH, I’m so happy to be able to provide even more love and guidance to those who are just beginning their journey after diagnosis.”
“I always tell new patients with PAH to remember that when you’re having those rough days, you have to be kinder to yourself. You have to tell yourself it’s not a bad day; it just may be a bad day for this particular activity.”
“You are in charge of your PAH, not your PAH in charge of you.”
Married for almost four years, Lauren and her husband are excited to see where life takes them and look forward to traveling. Lauren feels her PAH is not stopping her from living a life full of new experiences. “I continue to take part in all the things I love to do. You have to remember: you are in charge of your PAH, not your PAH in charge of you.”
This is an example of one patient’s experience. Always talk to your doctor to see if Adempas is right for you.
Terri’s journey with PAH
Terri had a full-time job and managed a T-shirt business with her husband right out of their home. She was energetic, active, and felt like she could do anything, when her health suddenly took an unexpected turn.
It began when she started experiencing fainting spells. The first time it happened, she was drying her hair, and then she lost consciousness and woke up on the floor. “I went from being perfectly fine one day to passing out another,” she remembers. “I didn’t even feel dizzy before I fainted.”
More problems arose when she’d walk across her yard, from the T-shirt shop on her property to the front door of her home. “I would have to sit, I’d be completely out of breath.” She found the episodes strange because they’d go as quickly as they came. “I really never sought help with them because they were just random,” she said. “When I passed out, I would wake up and feel fine.”
The fainting spells and breathing difficulties continued, and she passed out 3 times over a 6-month period. Concerned, she went to the doctor and was told that she was out of shape. She began an exercise regimen, but that seemed to make matters worse. “At that point, I started having what I would liken to asthma attacks, where I just completely couldn’t catch my breath.” Terri’s symptoms escalated from there.
“I went from being perfectly fine one day to passing out
another. I didn’t even feel dizzy before I fainted.”
One day, Terri was out with her husband in their yard when she felt like she was going to pass out again. She reached for him, and he caught her as she fell, noticing on the way down that she wasn’t breathing. “He said I immediately turned blue,” Terri recalled. As a firefighter, he knew that meant Terri had been without oxygen for too long, and he performed CPR as a result.
When she woke up, Terri’s husband had brought her to the emergency room of their local community hospital, where a battery of tests were performed. Her blood pressure and electrocardiogram results came back normal, so she was misdiagnosed with syncope and sent home.
An hour after getting home, she fainted again. “We went back to the emergency room and we said, ‘Look, this is our second trip here in less than 2 hours. Something is not right.’”
Terri was in the hospital for about 4 days until she was seen by the hospital cardiologist, who performed an echocardiogram and right-heart catheterization (RHC). After seeing her results, the doctors finally had an answer. Terri was informed that she had PAH and was in WHO functional class III.
After diagnosis, Terri’s cardiologist said he was surprised by the significant enlargement of her right heart. A month later, she finally saw a specialist. “I’d say it went uphill from there. Once we got all the bad news, we started trying to fix it.”
Terri was prescribed medications to manage her PAH, including Adempas, and her doctor informed her about the Adempas REMS Program and the risk of embryo-fetal toxicity.
“Once we got all the bad news, we started trying to fix it.”
Since being diagnosed with PAH, Terri and her husband have had to make adjustments in their lives. “We gave up our T-shirt business because I couldn’t be on my feet and bent over as many hours as that took,” she said. “We quit doing a lot of things. We just did not get out as much.”
Still, Terri decided to set goals for herself. “I had gotten to where I couldn’t do anything, and I didn’t work. We are avid campers and we didn’t go camping,” Terri said. “My goal was to get to where I was feeling better so that I could at least enjoy my family and enjoy everyday activities that we used to take for granted. Finally getting the correct diagnosis helped me get to this point.”
“My goal was to get to where I was feeling better so that I could at least enjoy my family and enjoy everyday activities that we used to take for granted. Finally getting the correct diagnosis helped me get to this point.”
Since being prescribed PAH medications, including Adempas, Terri has seen some improvements. Her doctor informed her about the Adempas REMS Program and the risk of embryo-fetal toxicity. Terri’s stamina is better and her 6-minute walk test has improved, which has led to improvements in her ability to exercise. “I can walk and do a little bit of a treadmill, but I can’t do any major cardio or anything of that nature.” As far as her part-time job goes, Terri said, “I limit myself as far as I don’t try to pick up a hundred folders and walk them down the corridor at work.”
Terri is aware and realistic about her limitations, but she still tries to challenge herself every day. “I feel like it’s easy to give up with this disease. It’s easy to give up and just say, ‘I’m not going to be able to do that anymore,’ or ‘I don’t think I can do that.’ But if I feel it’s safe to do it, then I’m going to try it.”
This is an example of one patient’s experience. Always talk to your doctor to see if Adempas is right for you.
Marsha’s journey with CTEPH
Marsha is a nurse who works in the emergency department of a hospital. Before she was diagnosed with CTEPH, she was a single mother of 3 children—the youngest still at home, while the others had made it out on their own. “I think most people would say I was just extremely energetic,” she said. “I could pretty much do whatever I needed to do, when I needed to do it.”
Raising 3 kids by herself was challenging, and her job was equally so. She relied on good stamina and a lack of physical constraints when it came to her work as a nurse. “I could transport people around on carts and beds and wheelchairs and I could do anything. And then things changed.”
“I was just very limited, and they [her coworkers] were very kind and were working around my physical limitations.”
Before going to the ER, Marsha thought she had a collapsed lung that turned out to be a pulmonary embolism (PE). She was prescribed blood thinners for 9 months and felt fine when her time on them ended.
But 2 years after the PE, she felt a change. Her stamina was failing, and she was having trouble walking. She called her doctor repeatedly, but wasn’t getting a response. Finally, she got an appointment. “He told me I had anxiety and prescribed me some anxiety medicine,” she recalls. “But I knew something else was wrong.”
The anxiety medication didn’t improve her condition, and her stamina continued to deteriorate. When she went to work one day and could barely walk, her coworker insisted on her seeing a specialist. Upon examination, it was discovered that she had another PE—one that she, in her words, “did not bounce back from.”
She continued to work, with difficulty. “I was just very limited, and they [her coworkers] were very kind and were working around my physical limitations,” she said. One of her colleagues, an ER physician, suggested she see a pulmonologist, and she decided to give it a try. A battery of tests were conducted, including a right-heart catheterization, and Marsha was diagnosed with PAH. “I feel like that pulmonologist really kind of saved my life,” she said.
“I realized that I hadn’t had a V/Q scan yet, and once I did, my doctor discovered that I had CTEPH rather than PAH.”
She began routine medications for PAH and slowly began to gain back some stamina. “I still was having problems, like pushing carts, and anything on an incline.” Still, she felt better than she did before her diagnosis with PAH, and she continued to take her medications.
After being a single mother for 14 years, Marsha remarried. She moved near a large city and transferred her care to a hospital that had a pulmonary hypertension program. She attended a pulmonary hypertension event with expert thought leaders, and that’s when she heard about CTEPH for the first time.
“I did research and learned more about CTEPH and the different types of pulmonary hypertension,” she said. “I realized that I hadn’t had a ventilation/perfusion (V/Q) scan yet, and once I did, my doctor discovered that I had CTEPH rather than PAH.” A V/Q scan (along with other assessments), as Marsha learned, is the preferred and recommended screening test for CTEPH. It’s the most accurate scan available for CTEPH, with a screening sensitivity greater than 96%.
Once diagnosed with CTEPH, Marsha was assessed for surgery and determined inoperable because of how deep her clots were in her lungs. Her medications were updated, and she was prescribed the only approved medical therapy for CTEPH: Adempas.
After beginning therapy with Adempas, Marsha started to see improvements in some of her symptoms. “When my doctor evaluated me and told me my functional class had improved, I felt better because I was improving.”
She has continued to improve on other measures, such as her 6-minute walk test, but still avoids stairs at work. “I kind of know what my new normal is, and I avoid certain things,” she says.
Marsha’s family is understanding of her illness, and her life at home with her husband is supportive. “It’s kind of odd because my husband—since we’ve been married for 3 and a half years—he’s never known me any different. He might not have liked the old me. I would have left him in the dust maybe! But he’s very, very understanding of it.” She is also close with her daughter and talks with her on the phone multiple times a day. “We’re like best friends. I think we kind of were before, but maybe more so now—very close.”
Throughout her journey with CTEPH, Marsha has set goals that center around spending time with her family. “I have 4 grandchildren, and I try to see them every 3 months,” she says. “I have goals, though they’re probably not super long-term.” Over time, she has come to accept her condition and gained perspective on how to think about it. “You can’t reverse it,” she says. “You can’t just stop it where it is. It’s going to keep progressing.”
Even so, she has been encouraged by the progress she has shown. “I was kind of pleasantly surprised when I really started to notice changes in the way I feel and what I was able to do. My laundry is in the basement, and now I am able to go down there to bring a basket up.” For Marsha, living with CTEPH is a journey of highs and lows, but she is grateful for the time she gets to spend working toward her greatest goal: spending time with her family. “My son is getting ready to graduate college, and my dad is still living. I’m planning to take an Alaskan cruise next summer,” she says. “My goals right now are all about relationships with people.”
“I kind of know what my new normal is,
and I avoid certain things.”
This is an example of one patient’s experience. Always talk to your doctor to see if Adempas is right for you.
Learn how additional myAim Education and Encouragement could support you throughout your journey. Click here to sign up.
Lauren’s journey with PAH
Lauren, a nurse from Wisconsin, has always had an adventurous, curious spirit. Her passion for traveling has taken her to many far-flung places.
Despite maintaining such an active and healthy lifestyle, at age 21, Lauren was faced with an obstacle that challenged her ability to take part in all the things she loved.
During a trip to South Korea, Lauren experienced symptoms that affected her at non-specific times.
“I brushed it off and blamed it on the increased altitude. I figured, ‘I’m healthy, I’m 21, nothing is going to happen to me.’”
Although Lauren looked past these warning signs, she soon realized something more was going on after a fainting episode that sent her to the emergency room.
Lauren received an echocardiogram, and a diagnosis of pulmonary arterial hypertension (PAH) (WHO Group 1) was confirmed by a right heart catheterization.
“You hear all these stories of people who go years being undiagnosed, and with one event, I had an immediate diagnosis. I was lucky.”
“I figured, ‘I'm healthy, I'm 21, nothing is going
to happen to me.’”
After Lauren’s diagnosis, her doctor immediately initiated her first PAH treatment. “It was not easy trying to balance both my studies and my PAH. I had to adjust to a lifestyle that was different from what I was used to.”
After a couple of years of treatment, Lauren’s doctor spoke with her about starting a new therapy strategy with Adempas, informing Lauren about the Adempas REMS program and risk of embryo-fetal toxicity.
After opting in, an Aim services nurse, provided by Bayer, was sent to Lauren’s home to offer support and guidance (in consultation with her doctor) throughout the therapy transition process.
“I had to adjust to a lifestyle that was different from
what I was used to.”
Because Lauren experienced symptoms of low blood pressure when starting treatment with Adempas, her doctor decided to lower the dosage and monitor her. Soon, they were able to increase her dose and ultimately find what worked best for her.
“It took about 6 months to get to where I am now with Adempas, comfortable and feeling an improvement in my exercise capacity.”
Adjusting to a new lifestyle with PAH is no easy task. For Lauren, it took time to understand her diagnosis and what her care looks and feels like.
Lauren strongly believes in being your own advocate as a patient—learning from your doctor about what the right treatment options are for you, and keeping an open line of communication about how you are feeling.
“You have to take things one step at a time and set realistic goals for yourself. If your goal for the day is to walk out to the mailbox and get the mail, that’s perfectly ok!”
“You have to take things one step at a time and set
realistic goals for yourself.”
Lauren also feels her experience with PAH has provided her a framework in offering support to those living with this condition.
“My career as a nurse is centered around helping others. Having adjusted to a life with PAH, I’m so happy to be able to provide even more love and guidance to those who are just beginning their journey after diagnosis.”
“I always tell new patients with PAH to remember that when you’re having those rough days, you have to be kinder to yourself. You have to tell yourself it’s not a bad day; it just may be a bad day for this particular activity.”
“You are in charge of your PAH, not your PAH in charge of you.”
Married for almost four years, Lauren and her husband are excited to see where life takes them and look forward to traveling. Lauren feels her PAH is not stopping her from living a life full of new experiences. “I continue to take part in all the things I love to do. You have to remember: you are in charge of your PAH, not your PAH in charge of you.”
This is an example of one patient’s experience. Always talk to your doctor to see if Adempas is right for you.
Terri’s journey with PAH
Terri had a full-time job and managed a T-shirt business with her husband right out of their home. She was energetic, active, and felt like she could do anything, when her health suddenly took an unexpected turn.
It began when she started experiencing fainting spells. The first time it happened, she was drying her hair, and then she lost consciousness and woke up on the floor. “I went from being perfectly fine one day to passing out another,” she remembers. “I didn’t even feel dizzy before I fainted.”
More problems arose when she’d walk across her yard, from the T-shirt shop on her property to the front door of her home. “I would have to sit, I’d be completely out of breath.” She found the episodes strange because they’d go as quickly as they came. “I really never sought help with them because they were just random,” she said. “When I passed out, I would wake up and feel fine.”
The fainting spells and breathing difficulties continued, and she passed out 3 times over a 6-month period. Concerned, she went to the doctor and was told that she was out of shape. She began an exercise regimen, but that seemed to make matters worse. “At that point, I started having what I would liken to asthma attacks, where I just completely couldn’t catch my breath.” Terri’s symptoms escalated from there.
“I went from being perfectly fine one day to passing out
another. I didn’t even feel dizzy before I fainted.”
One day, Terri was out with her husband in their yard when she felt like she was going to pass out again. She reached for him, and he caught her as she fell, noticing on the way down that she wasn’t breathing. “He said I immediately turned blue,” Terri recalled. As a firefighter, he knew that meant Terri had been without oxygen for too long, and he performed CPR as a result.
When she woke up, Terri’s husband had brought her to the emergency room of their local community hospital, where a battery of tests were performed. Her blood pressure and electrocardiogram results came back normal, so she was misdiagnosed with syncope and sent home.
An hour after getting home, she fainted again. “We went back to the emergency room and we said, ‘Look, this is our second trip here in less than 2 hours. Something is not right.’”
Terri was in the hospital for about 4 days until she was seen by the hospital cardiologist, who performed an echocardiogram and right-heart catheterization (RHC). After seeing her results, the doctors finally had an answer. Terri was informed that she had PAH and was in WHO functional class III.
After diagnosis, Terri’s cardiologist said he was surprised by the significant enlargement of her right heart. A month later, she finally saw a specialist. “I’d say it went uphill from there. Once we got all the bad news, we started trying to fix it.”
Terri was prescribed medications to manage her PAH, including Adempas, and her doctor informed her about the Adempas REMS Program and the risk of embryo-fetal toxicity.
“Once we got all the bad news, we started trying to fix it.”
Since being diagnosed with PAH, Terri and her husband have had to make adjustments in their lives. “We gave up our T-shirt business because I couldn’t be on my feet and bent over as many hours as that took,” she said. “We quit doing a lot of things. We just did not get out as much.”
Still, Terri decided to set goals for herself. “I had gotten to where I couldn’t do anything, and I didn’t work. We are avid campers and we didn’t go camping,” Terri said. “My goal was to get to where I was feeling better so that I could at least enjoy my family and enjoy everyday activities that we used to take for granted. Finally getting the correct diagnosis helped me get to this point.”
“My goal was to get to where I was feeling better so that I could at least enjoy my family and enjoy everyday activities that we used to take for granted. Finally getting the correct diagnosis helped me get to this point.”
Since being prescribed PAH medications, including Adempas, Terri has seen some improvements. Her doctor informed her about the Adempas REMS Program and the risk of embryo-fetal toxicity. Terri’s stamina is better and her 6-minute walk test has improved, which has led to improvements in her ability to exercise. “I can walk and do a little bit of a treadmill, but I can’t do any major cardio or anything of that nature.” As far as her part-time job goes, Terri said, “I limit myself as far as I don’t try to pick up a hundred folders and walk them down the corridor at work.”
Terri is aware and realistic about her limitations, but she still tries to challenge herself every day. “I feel like it’s easy to give up with this disease. It’s easy to give up and just say, ‘I’m not going to be able to do that anymore,’ or ‘I don’t think I can do that.’ But if I feel it’s safe to do it, then I’m going to try it.”
This is an example of one patient’s experience. Always talk to your doctor to see if Adempas is right for you.
Marsha’s journey with CTEPH
Marsha is a nurse who works in the emergency department of a hospital. Before she was diagnosed with CTEPH, she was a single mother of 3 children—the youngest still at home, while the others had made it out on their own. “I think most people would say I was just extremely energetic,” she said. “I could pretty much do whatever I needed to do, when I needed to do it.”
Raising 3 kids by herself was challenging, and her job was equally so. She relied on good stamina and a lack of physical constraints when it came to her work as a nurse. “I could transport people around on carts and beds and wheelchairs and I could do anything. And then things changed.”
“I was just very limited, and they [her coworkers] were very kind and were working around my physical limitations.”
Before going to the ER, Marsha thought she had a collapsed lung that turned out to be a pulmonary embolism (PE). She was prescribed blood thinners for 9 months and felt fine when her time on them ended.
But 2 years after the PE, she felt a change. Her stamina was failing, and she was having trouble walking. She called her doctor repeatedly, but wasn’t getting a response. Finally, she got an appointment. “He told me I had anxiety and prescribed me some anxiety medicine,” she recalls. “But I knew something else was wrong.”
The anxiety medication didn’t improve her condition, and her stamina continued to deteriorate. When she went to work one day and could barely walk, her coworker insisted on her seeing a specialist. Upon examination, it was discovered that she had another PE—one that she, in her words, “did not bounce back from.”
She continued to work, with difficulty. “I was just very limited, and they [her coworkers] were very kind and were working around my physical limitations,” she said. One of her colleagues, an ER physician, suggested she see a pulmonologist, and she decided to give it a try. A battery of tests were conducted, including a right-heart catheterization, and Marsha was diagnosed with PAH. “I feel like that pulmonologist really kind of saved my life,” she said.
“I realized that I hadn’t had a V/Q scan yet, and once I did, my doctor discovered that I had CTEPH rather than PAH.”
She began routine medications for PAH and slowly began to gain back some stamina. “I still was having problems, like pushing carts, and anything on an incline.” Still, she felt better than she did before her diagnosis with PAH, and she continued to take her medications.
After being a single mother for 14 years, Marsha remarried. She moved near a large city and transferred her care to a hospital that had a pulmonary hypertension program. She attended a pulmonary hypertension event with expert thought leaders, and that’s when she heard about CTEPH for the first time.
“I did research and learned more about CTEPH and the different types of pulmonary hypertension,” she said. “I realized that I hadn’t had a ventilation/perfusion (V/Q) scan yet, and once I did, my doctor discovered that I had CTEPH rather than PAH.” A V/Q scan (along with other assessments), as Marsha learned, is the preferred and recommended screening test for CTEPH. It’s the most accurate scan available for CTEPH, with a screening sensitivity greater than 96%.
Once diagnosed with CTEPH, Marsha was assessed for surgery and determined inoperable because of how deep her clots were in her lungs. Her medications were updated, and she was prescribed the only approved medical therapy for CTEPH: Adempas.
After beginning therapy with Adempas, Marsha started to see improvements in some of her symptoms. “When my doctor evaluated me and told me my functional class had improved, I felt better because I was improving.”
She has continued to improve on other measures, such as her 6-minute walk test, but still avoids stairs at work. “I kind of know what my new normal is, and I avoid certain things,” she says.
Marsha’s family is understanding of her illness, and her life at home with her husband is supportive. “It’s kind of odd because my husband—since we’ve been married for 3 and a half years—he’s never known me any different. He might not have liked the old me. I would have left him in the dust maybe! But he’s very, very understanding of it.” She is also close with her daughter and talks with her on the phone multiple times a day. “We’re like best friends. I think we kind of were before, but maybe more so now—very close.”
Throughout her journey with CTEPH, Marsha has set goals that center around spending time with her family. “I have 4 grandchildren, and I try to see them every 3 months,” she says. “I have goals, though they’re probably not super long-term.” Over time, she has come to accept her condition and gained perspective on how to think about it. “You can’t reverse it,” she says. “You can’t just stop it where it is. It’s going to keep progressing.”
Even so, she has been encouraged by the progress she has shown. “I was kind of pleasantly surprised when I really started to notice changes in the way I feel and what I was able to do. My laundry is in the basement, and now I am able to go down there to bring a basket up.” For Marsha, living with CTEPH is a journey of highs and lows, but she is grateful for the time she gets to spend working toward her greatest goal: spending time with her family. “My son is getting ready to graduate college, and my dad is still living. I’m planning to take an Alaskan cruise next summer,” she says. “My goals right now are all about relationships with people.”
“I kind of know what my new normal is,
and I avoid certain things.”
This is an example of one patient’s experience. Always talk to your doctor to see if Adempas is right for you.
Learn how additional myAim Education and Encouragement could support you throughout your journey. Click here to sign up.
