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Stacey
STACEY (She/Her)
About Me/Diagnosis:
Stacey McCarthy was diagnosed with Pulmonary Hypertension 15 years ago when she was just
37 years old and a single mom of one. Before her diagnosis, she considered herself a healthy
person. Although she had done everything the doctors recommended, she never really
understood what was happening to her for several years after diagnosis. Although Stacey is
idiopathic, she did not feel this would affect her overall health.
Stacey persevered through and met her current husband who supports and motivates her daily
in managing her condition.
Career/Hobbies/Interest:
Stacey found hobbies and interests that she could do with PH. Her biggest passion has been
riding a motorcycle as she and her husband have ridden through many states around the US.
Once Stacey realized that she was not the only person in the world living with PH she started
leaning more on the PH community around her. She has been very involved with her care team
at the university where she is currently treated and has been a support group leader for PH in
her area where they meet every 3 months. Stacey is passionate about offering support to newly
diagnosed patients while continuing to spread awareness in smaller communities. She is a
volunteer with Team PHenomenal Hope where she serves as an active board member and
assists with patient programs.
Why did you become a Peer Supporter?/How can you contribute to this role?
Stacey wants to help newer patients get answers to their questions and share experiences.
“Just knowing that someone else has gone through what you are, definitely takes some of the
fear out of this disease.” She was one of the first patients in the San Diego area to get the new
medication “Winrevair”. She feels that the PH world is changing quickly in a positive way and
she can spread that hope and positivity to other patients.
Medications/Treatments:
Winrevair, Opsumit, Adempas
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Location: San Diego, CA
Kathleen
Kathleen (She/Her)
About Me/Diagnosis:
Kathleen was diagnosed with Mild Primary Pulmonary Hypertension in 2001 after about 6 months of doctor visits and tests. She was 38 years old and had three small boys at the time of her diagnosis.
Career/Hobbies/Interest:
Kathleen has worked as an itinerant teacher with deaf students and worked as an InterVarsity Christian Fellowship staff member for several years. Kathleen is also very active in the music ministry at her church where she plays guitar and sings. She states “It brings me much joy!” Kathleen also enjoys cycling and jogging in her free time.
Why did you become a Peer Supporter?/How can you contribute to this role?
“I became a Peer Supporter because I know how scary it is to be diagnosed with PH and how much there is to learn. It can be overwhelming and feel lonely.” Kathleen hopes to provide support and encouragement and share what she has learned and experienced with newly diagnosed patients. She describes herself as compassionate and a good listener. Kathleen has been an active supporter of Team PHenomenal Hope for several years and is involved in a variety of activities including fundraising.
Medications/Treatments:
calcium channel blockers, Tracleer, or Ambrinsenten
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Location: Kathleen, Deposit, NY
Anna
Anna (She/Her)
About Me/Diagnosis:
Anna is from Pittsburgh, Pennsylvania. She was diagnosed with PH at the age of six. She began to notice that daily activities became more difficult. Anna struggled for many years with her symptoms and mental health (Idiopathic Pulmonary Arterial Hypertension) “You never know how strong you are until being strong is the only choice you have.” – Bob Marley. We all are strong and can get through this together!
Career/Hobbies/Interest:
She enjoys riding horses, and arts/crafts while using her Cricut Machine, listening to music, and spending quality time with her family and friends.
Why did you become a Peer Supporter?/How can you contribute to this role?
Anna noticed that resources for younger PH patients were limited so she became passionate about helping her peers living with PH to access resources. She enjoys inspiring patients to persevere and focus on what they love! Anna offers active listening and compassion for those seeking guidance and mental health challenges.
Medications/Treatments:
Procardia, Coumadin
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Location: Pittsburgh, Pennsylvania
Diana
Diana (She/Her)
About Me/Diagnosis:
Diana was diagnosed with Group 5 PH secondary to fibrosing mediastinitis in 2019, before her 30th birthday. In early 2018, before her diagnosis, she was prescribed supplemental oxygen, which presented challenges; however, she has managed to maintain a positive
perspective.
Career/Hobbies/Interest:
Diana is a paralegal and in her free time, she enjoys staying active, reading, and spending time with her cat, Tigger. Diana is also active at her church where she assists with media needs. She
believes living a healthy lifestyle has been key to helping her thrive! Her motto is “To Thrive, not
just Survive”.
Why did you become a Peer Supporter?/How can you contribute to this role?
Diana has a passion for inspiring other PH patients. She wants them to know that their
diagnosis does not have to be a life-is-over outlook and instead to be inspired daily while
knowing they are worthy and valued as a person. Diana is motivated to help patients live their
best lives while offering advice and techniques to live a meaningful and productive life despite
their condition.
Medications/Treatments:
lasix to help with fluid retention and inhalers to treat mild, intermittent asthma.
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Location: Hanover, PA
Kevin
Kevin (He/Him)
About Me/Diagnosis:
Kevin has been married for 31 years and they share two grown kids and reside in Central Kentucky.
He had a heart attack in 2019. After having some issues, he had a stress test done which he failed due to his inability to breathe. This started a battery of tests leading to a Right Heart Cath (RHC) in 2019.
He was then diagnosed with Idiopathic Pulmonary Arterial Hypertension and prescribed medicine in the Cath lab. Afterward, Kevin was not provided any instructions on what to do or expect next and where to go for support so he began searching for information/resources on his own. Left feeling alone, he became diligent at advocating for himself as a PH patient and other PH patients.
Career/Hobbies/Interest:
Kevin works full-time in accounting for a large company. He also enjoys photography and playing video games as well as traveling and camping.
Why did you become a Peer Supporter?/How can you contribute to this role?
Kevin is passionate about seeking resources for himself and other patients in need as he has located many resources. He feels that his tenacity and will to persevere can help inspire others to advocate for themselves while striving to live a productive life as PH patients.
Medications/Treatments:
Ambrisentan (Letaris), Tadalafil (Adcirca), Winrevair
Location: Lawrenceburg, KY
Lenise
Lenise (She/Her)
About Me/Diagnosis:
Lenise was diagnosed with congestive heart failure which developed into pulmonary hypertension in 2012. Despite her diagnosis, she has not allowed the disease to take over her life as she has found alternative ways to cope and maintain a healthy and social lifestyle. Lenise has relied on her deep faith which gives her strength and comfort. Her motto is “Live your life the best way possible and make changes where necessary”.
Career/Hobbies/Interest:
Lenise has been very active within the PH community and has been a PH patient advocate since her diagnosis. She is currently a junior-year student of Biblical Studies. She also leads a bi-monthly PH support group where she encourages patients to stay informed and educated about the disease through community participation. Lenise is an avid reader and enjoys baking and knitting. She also enjoys shopping at the local farmer’s markets and trying new healthy recipes.
Why did you become a Peer Supporter?/How can you contribute to this role?
Lenise became a peer supporter because she knows firsthand the loneliness and isolation caused by the disease, how it feels to manage multiple doctor visits and medications, and the importance of having someone to talk with as an outlet. Most of the time we know what to do, we just need to talk it out.
Medications/Treatments:
Jardiance/ Remodulin
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Location: Brooklyn, New York
Harry
Harry (He/Him)
About Me/Diagnosis:
After Harry had been misdiagnosed for years, Stanford Hospital determined that he had CTEPH (Chronic Thrombo-embolic Pulmonary Hypertension), which was 31 years ago. At the time there was only one hospital in the world that could address CTEPH surgically; the University of California San Diego Medical Center. Harry was a fortunate candidate for surgery and in March 1994 underwent a PTE (Pulmonary Thombo-Endarterectomy) as patient #495. He was cured and had decided he would give back from that point forward. Harry was the fundraising chair for the Pulmonary Center at UCSD for 2 years where he served on the board of the Pulmonary Hypertension Association for 9 ½ years and served 2 years on the board of the Pulmonary Hypertension Association of Canada, as one of the founders of PHaware Global Association. Harry was also the holder of the annual “Driving Fore a Cure” golf tournament in California. Over the years he has interfaced with the PH community in locations around the world.
Career/Hobbies/Interest:
Because UCSD gave Harry his life back he was fortunate to have a very successful business career in the tech industry as a CEO of both public and private companies as well as a serial entrepreneur. He has had the good fortune to live and travel around the world and used that to forward his mission with the PH community. Since retiring Harry has authored 2 books and multiple articles on a range of topics. He remains active walking 4-6 miles 5 days a week and golfing and working out.
Why did you become a Peer Supporter?/How can you contribute to this role?
Harry states that he is forever indebted to the physicians, nurses, medical support personnel, patients, and caregivers of the PH community. After recovering from his surgery 30 years ago, he has been committed to giving back to the community. “I believe my history of working with patients and the community over the past 30 years will enable me to contribute to this role.”
Medications/Treatments:
Coumadin
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Location: Wake Forest, North Carolina
Kira
Kira (She/Her)
About Me/Diagnosis:
Kira is a proud queer with a quirky authentic personality. She has a nineteen-year-old daughter who she adores. Kira loves animals and has an ancient chihuahua named Yoda who she says never listens. Kira has a long-term partner has been very supportive throughout her journey with PH, which has contributed to her deep involvement with the PH community. Kira was diagnosed with Idiopathic Pulmonary Arterial Hypertension for over ten years. Kira is currently on an Adcirca (Tadalafil) and Subcutaneous Remodulin infusion pump cocktail, specifically the new Remunity pump, her first CADD pump.
Career/Hobbies/Interest:
Kira spends her free time “fangirling over Ortegas on “Star Trek Strange New Worlds”, playing Dungeons and Dragons, crocheting hats for gnomes, and reading questionable fiction.
Why did you become a Peer Supporter?/How can you contribute to this role?
“I became a Peer supporter predominantly because the PH community has been so incredibly supportive since my diagnosis and now I have an opportunity to pay that forward.”
Medications/Treatments:
Adcirca (Tadalafil) and Subcutaneous Remodulin infusion pump cocktail, specifically the new Remunity pump, CADD pump.
Location: Pueblo, Colorado
Aubrey
Aubrey (He/Him)
About Me/Diagnosis:
Aubrey is a 39-year-old father of three young girls. With the support of his wonderful wife, he has learned how to live with PH. Aubrey was diagnosed with IPAH in the summer of 2018 at the age of 33. This summer was one of the most challenging experiences of his life. He had gone from a D1 collegiate soccer player years earlier to later needing to take a break after walking up one flight of stairs. He is thankful for a fantastic group of health professionals who quickly diagnosed him and had him start IV infusion therapy.
Career/Hobbies/Interest:
Aubrey has earned his Ph.D., started a career in academia, and enjoys cycling to stay active.
Why did you become a Peer Supporter?/How can you contribute to this role?
Aubrey has certainly had challenging times over the years including having difficulty finding people like him to connect with. He has quickly learned PAH is a very rare disease, and it is even more rare for young males with no other underlying medical condition. This has inspired him to become a peer supporter. Aubrey is looking forward to providing support and guidance to newly diagnosed patients who might be in a similar situation.
Medications/Treatments:
Tadalafil (Adcirca), intravenous epoprostenol (Veletri), and sotatercept (Winrevair)
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Location: Bloomington, IL
Alicia
Alicia (She/Her)
About Me/Diagnosis:
Alicia Kubes was diagnosed with idiopathic Pulmonary Arterial Hypertension in 2018. She has experience with triple combination therapy including oral and intravenous medications as well as supplemental oxygen. Alicia is the founding leader of the PHA NYC-Manhattan Support Group, which is structured as a virtual book club open to all PH patients interested in discussing readings through the common lens of having a chronic illness. During the day, you’ll see her navigating the New Jersey-New York public transportation system wearing her portable oxygen to her job as an academic director at New York University.
Career/Hobbies/Interest:
During her free time, Alicia is a lifelong learner who enjoys taking Tin Whistle lessons and practicing aromatherapy. Born in Venezuela to Guatemalan and Czech parents, Alicia is also an enthusiastic traveler. Alicia is dedicated to being a peer supporter who listens with an open heart and open mind.
Why did you become a Peer Supporter?/How can you contribute to this role?
Her overall goal is to connect with other PH patients to share tools, resources, and life experiences; talk honestly about the good and the bad; and work together to empower ourselves and others to live the best life possible.
Medications/Treatments:
Ambrisentan (Letairis)
Tadalafil (Adcirca)
Intravenous treprostinil (Remodulin)
Riociguat (Adempas)
Selexipag (Uptravi)
Macitentan (Opsumit)
Selexipag (Uptravi)
Macitentan (Opsumit)
Digoxin
Spironolactone
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Location: New York, NY