Pathlight - Summer 2022

A publication of the Pulmonary Hypertension Association

DUAL ROLES: Patients and Caregivers as Clinicians

PLUS

QUEER

REPRESENTATION IN THE PH COMMUNITY

CONFERENCE AS A CROSSROADS

Volunteer

Spreads Hope and Strength

2022 // Volume 31 // No. 2

Life With PAH Can Be Challenging.

Learning About PAH Shouldn’t Be. Join a free, educational webinar in the comfort and safety of your home

IN THIS ISSUE 2022 // VOLUME 31 NO. 2

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Not Going to Atlanta? Be Part of PHA 2022 at Home

8

Conference as a Crossroads

12 Queer Representation in the PH Community

The Navigating PAH Pathways program offers free webinars created specifically for patients and caregivers, all led by a PAH Nurse and sponsored by Janssen.*

17 Volunteer Spreads Hope and Strength 18 Dual Roles: Patients and Caregivers as Clinicians 24 Manage Your Career, Education and PH

Find Answers

Learn Why

Get Talking

25 Get Moving: Improve Outcomes and Quality of Life

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26 10 Tips to Manage Medication and Oxygen for PHA 2022

Hear an educational Understand more about the Discover how to have more presentation from a PAH effects of PAH, the 3 key informed conversations nurse on topics that may be treatment pathways, and about PAH with your care Knowledge.

Understanding. Empowerment. important to you. treatment goals. community.

28 PHA 2022: Drawing Scientists from Around the World

12 18

30 Fighting a Debilitating Disease by Giving Back

Webinars are available at various dates and times so you can register for one that best fits your schedule.

Register today at PAHregister.com or call 1-888-370-8111

ON OUR COVER Chandani DeZure, M.D., with her son, Ryan, who has PH. This issue explores the ways PH intersects with the many aspects of life, including career, family, identity and wellbeing.

Your PAH healthcare team should always be your main source of information. This program is not intended to provide medical advice or address specific medical concerns.

All webinars are viewed on a computer; internet access required.

PAH=pulmonary arterial hypertension.

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*The speaker is a paid consultant presenting on behalf of Actelion, a Janssen Pharmaceutical Company, and must present information in compliance with FDA requirements applicable to Actelion, a Janssen Pharmaceutical Company.

IN EVERY ISSUE 5

Letter From the Chair

32 Quick Takes 33 Calendar This program is sponsored by Janssen Pharmaceuticals, Inc. ©2021 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v1 0121

34 Passages Knowledge. Understanding. Empowerment.

PHASSOCIATION.ORG 3

PUBLISHER

BOARD OF TRUSTEES

Matt J. Granato President & CEO

Colleen Brunetti, M.Ed., C.H.C., chair Tony Lahnston, chair-elect/treasurer Karen A. Fagan, M.D., immediate past chair Nicole Creech, secretary Matt J. Granato, LL.M., MBA, President and CEO, ex officio

STAFF Linda Busche Editor-in-Chief Karen Smaalders Vice President, Communications and Marketing

CONTRIBUTORS Danielle Anderson, Stephen CarterHicks, Chandani DeZure, Zhiyu Dai, Allison Dsouza, Mary Felkel, Diego Gil, Angela Golden, Tonya Hall, Lauren Intrieri, Sara Lambirth, Zan Laughlin, Linda Morgan Teresa Muller, Nesha Ridings, Nancy Rivas, Abby Sickles, Jaeger Spratt, Sydney Ward, Melissa White. Design: Mary Beth Ramsey.

Cover photos: Michelle Lynn

CONTACT 8401 Colesville Road, Suite 200 Silver Spring, MD 20910 TEL: 301-565-3004 FAX: 301-565-3994 WEB: PHAssociation.org EMAIL: PHA@PHAssociation.org

Trustees-at-Large Cheri Abbott, R.N., CCRP Frank Cann Murali M. Chakinala, M.D., FCCP Colleen Connor Ramona Doyle, M.D., M.Sc. Anna R. Hemnes, M.D. Kimberly Jackson, R.N., B.S.N. William Jansen Mitch Koppelman, Ph.D. Michelle Ferdinand Liu, M.D., M.P.H., FAAOA Ronald J. Oudiz, M.D. Monica M. Penaranda Diane Ramirez Traci Stewart, R.N., M.S.N., CHFN Doug Taylor Matt Wall Jessie Kohler Wenninger, Esq. Melisa A. Wilson, D.N.P., APRN, ACNP-BC Emeriti ex-officio C. Gregory Elliott, M.D., FCCP, MACP Michael D. McGoon, M.D. Edwin Simpson Judith Simpson, R.N., Ed.S.

Murali M. Chakinala, M.D., FCCP, chair Anna R. Hemnes, M.D., chair-elect Ronald J. Oudiz, M.D., immediate past chair Steven H. Abman, M.D. William R. Auger, M.D. Eric D. Austin, M.D. MSCI Sonja Bartolome, M.D. Todd M. Bull, M.D. Kelly Chin, M.D. Vinicio A. de Jesus Perez, M.D., FCCP, FAHA, ATSF Teresa De Marco, M.D. Ankit A. Desai, M.D., FACC, FAHA Jeffrey Fineman, M.D. Robert P. Frantz, M.D. Mardi Gomberg-Maitland, M.D., M.Sc. Kristin B. Highland, M.D., MSCR Steven Kawut, M.D., M.S. Tim Lahm, M.D. Deborah J. Levine, M.D. Lana D. Melendres-Groves, M.D. John J. Ryan, M.D., M.B., B.Ch., B.A.O. Jeffrey S. Sager, M.D., MSCE Oksana A. Shlobin, M.D., FCCP Thenappan Thenappan, M.D. Corey E. Ventetuolo, M.D., M.S. R. James White, M.D., Ph.D. Timothy L. Williamson, M.D. Delphine Yung, M.D. Liaisons Cheri Abbott, R.N., CCRP Kimberly Jackson, R.N., B.S.N.

SUPPORT LINE

Honorary

Distinguished Advisors

800-748-7274

Carl Hicks

We’re here to support anyone with a connection to PH. (daytime, please)

President & CEO

David B. Badesch, M.D. Erika S. Berman Rosenzweig, M.D. Bruce H. Brundage, M.D. Richard Channick, M.D. C. Gregory Elliott, M.D., FCCP, MACP Karen A. Fagan, M.D. Michael D. McGoon, M.D. Vallerie V. McLaughlin, M.D. John H. Newman, M.D.

Submissions to Pathlight are welcome.

Please email your articles, photos and queries to Communications@ PHAssociation.org.

4 PATHLIGHT

Matt J. Granato, LL.M., MBA PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE Cheri Abbott, R.N., CCRP, chair Kimberly Jackson, R.N., B.S.N., chairelect Fran Rogers, M.S.N., CRNP, immediate past chair Loida A. Johnson, CRNP Tisha Kivett, R.N., B.S.N. Melissa Magness, M.S.N., APRN, CNP-AC Susie McDevitt, M.S.N., ACNP-BC

LETTER from the

SCIENTIFIC LEADERSHIP COUNCIL

CHAIR Dear PHA Community, It’s hard to believe, but this issue of Pathlight is my last as chair, and this is my last letter to the community in this role.

Trying to encompass what these last two years has been would take so much more than a column. Like the rest of the world, PHA continues to navigate unprecedented times, and it’s been a wild ride.

I accepted this role in 2018, serving two years as chair elect. In June 2020, I began my two-year term as chair.

In 2018, I never could have imagined how things would change.

I don’t have to tell you what 2020 had already begun to bring us! I started my term three months into the pandemic in the U.S. COVID-19 was on everyone’s mind and a part of everyone’s lives. What we didn’t know was how long it would last and how it would continue to affect us.

PANDEMIC BLUES

Just prior to my start as chair, the board had voted to make the heartbreaking decision to cancel PHA 2020. While the decision was so difficult, that was when I saw that the PHA we had built and loved was made for times like those.

Despite the deep disappointment, the PHA staff never missed a beat. Everyone rallied and created new learning opportunities and ways to reach the community through live-stream broadcasts of PHA Connects. Support groups and fundraisers went virtual, allowing people from all over the country to stay connected.

Around this time, it dawned on me, “Of course we can do this! PHers have always had to do hard things. We’ve

always had to find our community over distance and over screens. We can do this too.” And I knew we would be OK. The truth is, PHA is more than OK. We are thriving.

NEW INSPIRATION

In January 2021, we welcomed our new CEO Matt Granato. Under his leadership, PHA has continued to grow in exciting ways. We’ve expanded our advocacy work; trained the board and staff in diversity, equity and inclusion initiatives; grown relationships with companies working on exciting new treatments; and so much more.

I am especially excited about the PHA-accredited Pulmonary Hypertension Care Centers network. It’s been a decade since that project began, and we continue to set the bar for state-of-the-art PH care.

As part of that program, our PHA Registry enrolled its 2,022nd patient in 2022! I am more convinced than ever that these programs are key to a better life for patients like me and the community I love.

In short, the pandemic didn’t stop the momentum.

Despite navigating all the twists and turns, we are stronger for it. It’s been one of the greatest honors of my life to serve the PH Community in this role. It’s also been one of the more challenging endeavors I’ve taken on. But I am humbled that my fellow board members allowed me to lead, and I’m thankful to PHA and the staff for making it as easy as possible and enjoyable.

A leader is only as good as the people they are surrounded with, and I am blessed to be surrounded by the very best. Thank you to everyone who had any hand in making these last two years all they could be.

PHASSOCIATION.ORG 5

PHA 2022

MOVING FORWARD

Looking back, it is all is quite something, but I also think we should always be looking forward. We are, after all, empowered by hope.

This month, we look forward to welcoming everyone back in person in Atlanta for PHA 2022 International PH Conference and Scientific Sessions. We hope you can join us, but if you aren’t ready to or able to travel, we have ways for you to take part.

At PHA 2022, I will hand over my reign as chair to Tony Lahnston. Tony has served the PHA community for many years, first as a fundraiser, and then on the Board of Trustees. He does so in honor of his niece, Marchelle, who passed away from PH complications in 2007. Tony has served with compassion for the community and keen insight for PHA’s mission. I look forward to his leadership in the coming years.

If this pandemic is teaching us anything, it is that we are all connected, and that’s true within the PH community as well. The theme of this issue of Pathlight is intersectionality.

The stories in this issue explore the ways PH intersects with the many aspects of life, including career, family, identity and wellbeing. Here are a couple of highlights: Our cover story examines “Health Care Professionals With Personal Connections to PH.” We hear from people who came to the health care field because of a connection to PH, or because PH guided them in a new direction. We talk to a pediatrician whose son has PH; a woman with PH who was inspired to pursue a nursing career because of her mentor; and a nurse whose PH made her switch to clinic from floor work but also made her more empathetic and patient.

In “Queer Representation in the PH Community,” you’ll meet Stephen Carter-Hicks and Sydney Ward, who share how pulmonary arterial hypertension (PAH) intersects with their LBGTQIA+ identities. Stephen and Sydney share their stories for Pride Month, which celebrates the lesbian, gay, bisexual, transgender, queer, intersex, asexual community.

The donor spotlight relates how Linda Santos Morgan fights PH by giving back. Linda, a keynote speaker at PHA 2022, shares how her PH diagnosis led her to volunteer leadership as a support group leader and advocate. She is a member of the PHA 2022 Welcome Subcommittee.

6 PATHLIGHT

This issue of Pathlight also offers a look at PHA 2022.

We hear how PHA conferences bring together people from around the world in “Community Crossroad.” In the article, Zhiyu Dai, Mary Felkel, Nancy Rivas, Teresa Muller and Diego Gil discuss conference connections and PHA 2022’s role as a crossroads for the community.

In the volunteer spotlight, medical assistant Nesha Ridings welcomes PHA 2022 attendees to her home state.

Nesha, chair of the PHA 2022 Welcome Subcommittee, also is a support group leader and PHA fundraiser.

The issue also includes PHA 2022 travel tips, highlights of breakout sessions, the professional value of the Scientific Sessions and tips to participate in PHA 2022 from home.

It’s been a packed two years, and this is a packed issue of Pathlight. I hope you enjoy it. Thank you for being on this journey with me.

NOT GOING TO ATLANTA?

Be Part of PHA 2022 at Home

T

he Pulmonary Hypertension Association wants to make sure anyone can participate in PHA 2022 International PH Conference and Scientific Sessions. Even if you can’t make to Atlanta, we’ve made it possible for you to participate from home.

Our virtual option provides opportunities to participate in live streams of select general and breakout sessions.

FRIDAY, JUNE 10

Colleen Brunetti, M.Ed., C.H.C. Board of Trustees Chair, Pulmonary Hypertension Association

Opening session ▶ PHA support group leader Linda Santos-Morgan will share her PH experience, from diagnosis to empowerment. [See story, page 30.]

Self-Advocacy: Get What You Need

by Finding Your Voice ▶ Discover tips to work with your medical team, insurance company and specialty pharmacy. Plus, learn to address mental and emotional challenges related to navigating the health care system.

Gray Area: Navigating from Pediatric to Adult Care ▶ Panelists will guide you through the good, bad and confusing when transitioning yourself or your teen from pediatric to adult care. In this breakout session, PH patient shares personal challenges and successes, while clinicians offer strategies to minimize potential pitfalls Medical Update Dinner ▶ Stephen Mathai, M.D., M.H.S, associate professor of medicine and part of the Johns Hopkins pulmonary hypertension program will provide an update on the PHA and NIH-funded PVDOMICS study. The study seeks to

improve understanding of pulmonary vascular disease through phenomics and examines how physical and biochemical traits change in response to genetic mutation and environmental influences.

SATURDAY, JUNE 11

When PH Patients Need Surgery ▶ In this breakout session, panelists will describe the components of preparing people with PH for elective surgery, such as asking the right questions, involving your PH health care team(s) and safety precautions.

Returning to Care: Finding Normalcy After a Pandemic and Keeping the Best of What We Have Learned ▶ Panelists will review the obstacles of navigating health services during and after a pandemic in this breakout session. Learn about the differences between in-person and virtual care visits, and receive guidance on navigating appointments while maintaining safety.

Journeys Lunch ▶ A tradition since PHA 1994, the Journeys Lunch highlights the shared connections between people with PH and their care teams. Pairs of patients and health care providers will share stories of working together to build partnerships, break down barriers and plan for the future.

Caregivers Need Care Too ▶ Learn about the importance of caregiver resilience and wellness. Discover tips through simple practices such as mindfulness, laughter and bodycentered techniques.

Outstanding Member Awards ▶ This event celebrates PHA members who raise awareness and give voice to the PH community through advocacy, philanthropy, peer support, patient care and efforts to advance PH research.

Tune in to celebrate PHA’s outstanding physician, allied health professional, PH citizen, young PH citizen, caregiver and PHA support group leader, as well as winners of the Julie Hendry Memorial Scholarship.

SUNDAY, JUNE 12

Closing Brunch ▶ Stephen CarterHicks will share his journey from his days on Broadway to his PH diagnosis.

Hear how he creates ways to cope and his determination to live a full and rewarding life. [Read more about Stephen, page 13.]

Visit PHAssociation.org/ PHA2022 for details about these sessions and to register for PHA 2022’s Virtual Highlights Option.

PHASSOCIATION.ORG 7

PHA 2022

PHA 2022

COMMUNITY CROSSROAD Connecting through PHA Conferences PHA 2022 International PH Conference and Scientific Sessions brings together people from around the world to connect, share experiences and advocate for a cure. The biennial event returns June 10 through 12 in Atlanta for the first time in 4 years, after PHA 2020 was canceled because of the pandemic. In this article, we hear from new and repeat attendees about PHA 2022’s role as a crossroads for the pulmonary hypertension (PH) community.

NEW IN 2022: INTERNATIONAL ATTENDEE SOCIAL. Join the global PH community at 9 p.m. Saturday, June 11 at the Hyatt Regency Atlanta’s Twenty-Two Storys bar.

8 PATHLIGHT

ZHIYU DAI, PH.D. PHOENIX, ARIZONA

I first attended a PHA conference in 2016. At the time, I was in my postdoctoral training in lung vascular biology at University of IllinoisChicago. My mentor, YouYang Zhao, Ph.D., recommended that I attend PHA 2016, as it focused specifically on PH, and it was small enough that I could personally interact with those around me. I also attended PHA 2018.

At PHA 2018, I met a patient from China who had a double lung and heart transplant due to her PH. She told me that many people in China didn’t know about PH, although they had chronic obstructive pulmonary disease

or other lung diseases. We talked about how she organized many events to raise awareness and her advocacy work on behalf of the patient community.

Working in the lab, I don’t really get a chance to see patients as often as those practicing medicine. At Conference, you see patients carrying oxygen tanks and other gear who travel to get there. As a researcher, I learned to better understand how the disease I’m studying causes problems in people’s lives.

Though I can’t go to PHA 2022, I have encouraged my colleagues to attend. It’s a great way to connect to those in the medical field and patients.

It can be easy to get frustrated when our research team submits grants that

get rejected or when experiments don’t work out. But talking to patients at these events keeps me motivated to continue my research and find a cure for patients with PH.

MARY FELKEL SAINT AUGUSTINE, FLORIDA

I have attended every PHA conference since 1994. My daughter, the late Sally Maddox, Ed.D, was diagnosed with PH in 1990. After her diagnosis, Sally became a dedicated volunteer and passionate supporter of PHA, eventually becoming a member of the PHA Board of Trustees. My husband and I followed suit, volunteering at each PHA conference, helping to facilitate support groups for parents of adult patients.

When I went to conferences with Sally, I wasn’t going as Mary Felkel. I was going as Sally’s mom. Our family would do whatever we could to support her, whether it was attending breakout sessions or providing biological samples for the PHA Research Room. And as we did this, it felt like a family reunion: we were reconnected with old friends and networked with new ones from all sides of the PH community.

Conference truly brings everyone together. It bridges the gap between the medical field and people with PH. It brings together patients, family members, specialty pharmacies, researchers, doctors and nurses to advance treatment of the disease and support each other in advocating for a cure.

PHASSOCIATION.ORG 9

PHA 2022

PHA 2022

DIEGO GIL CALI, COLOMBIA

‘Attending PHA conferences led me to advocate for people with PH and other rare diseases.’

I was diagnosed with PH related to congenital heart disease when I was 8. That was 33 years ago. It took me almost six years of visiting many doctors to finally confirm my diagnosis.

Before 2010, I had never been interested in learning about PH. I lived a normal life with access to treatments and no connection to other patients.

One day at work, I did a quick Google search about PH. Frustrated that I didn’t find much information in Spanish, I searched in English instead.

By doing this, I found PHA and the

PHA International PH Conference and Scientific Sessions.

I realized that this conference would be an interesting opportunity to learn about PH and meet other patients from around the world. So I contacted PHA and prepared for my trip. It was one of the most important decisions of my life.

Attending PHA conferences led me to advocate for people with PH and other rare diseases.

Since 2013, I have been president of the Asociación Tejido Azul, which supports more than 500 people with PH, their caregivers and families in Colombia. Since 2020, I have served as executive director of the Colombian Federation of Rare Diseases.

PHA Conference has impacted my life in a wonderful way. It has opened doors when I wanted to learn more about PH, allowed me to meet great friends from different parts of the world (patients, caregivers and doctors), and it has served as an inspiration for our organization in Colombia and a global benchmark for good practices.

I am looking forward to learning more about progress in different countries, sharing best practices and extending our collaborative network. I also am looking forward to learning about the development of new therapies, as well as tools that can help us in our advocacy activities.

Most of all, I’m looking forward to reconnecting with great friends and leaders from different countries.

Diego Gil (right) with Gina Parziale, former director of the New York PHA chapter, at the 2013 New York City O₂breathe Walk.

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NANCY RIVAS NANDAYURE, COSTA RICA

This year will be my first time attending a PHA conference. My son was diagnosed with Group 5 PH in 2017. At the time, I had no idea what PH was and believed my son was given a death sentence. Living in a small country, we don’t have the same access to medication and other treatments available in the U.S. The average time to get a diagnosis in Costa Rica is two years. Luckily, my son received a diagnosis and medication within a year. Someone from my country got my son the medication he needed, and it made me realize we needed an organization in Costa Rica to support those with PH. As a lawyer, I helped organize the Asociación Costarricense de Hipertensión Pulmonar into a legal

entity, which works to ensure patient access to PH treatment.

I’m looking forward to attending PHA 2022. By attending, I hope I can help expand my country’s borders, connect with members of the international PH community and share resources.

Attending PHA 2022 will allow us to find different perspectives on how to advocate for our patients, share discoveries and find ways that all countries can help each other.

‘I hope I can help expand my country’s borders, connect with members of the international PH community and share resources.’

TERESA MULLER SANTIAGO, CHILE

I was diagnosed with PH in 2010 after a pulmonary thrombosis. After my diagnosis, I wanted to know as much about PH as possible and educate others about the disease. I currently serve as the president of the Pulmonary Hypertension Association in Chile (HAPCHI).

This year will be my third PHA conference. The conferences I’ve attended have helped me learn important information about PH for patients in Chile. I have become a better advocate for HPACHI’s community by attending PHA conferences, meeting

Nancy Rivas with her granddaughter Olivia Rivas Campos and son Hakeem Rivas Elizondo, who has PH.

people from other countries and discussing different perspectives and treatment options.

For HAPCHI, PHA conferences are especially important so we can gain knowledge related to scientific developments and the latest treatments.

This is one of our best opportunities to discover new medical information.

I advise everyone who attends PHA 2022 to ask questions and discuss them with members of the community. By having these discussions, we can help each other and grow the PH community regionally and internationally.

PHASSOCIATION.ORG 11

FEATURE

FEATURE

Stephen Carter-Hicks

I

QUEER

Representation In the PH Community STEPHEN CARTER-HICKS AND SYDNEY WARD share how pulmonary arterial hypertension (PAH) intersects with their LBGTQIA+ identities. Stephen is the keynote speaker for the closing session at PHA 2022 International PH Conference and Scientific Sessions. Sydney is a business owner and part-time yoga instructor. Stephen and Sydney share their stories for Pride Month, which celebrates the lesbian, gay, bisexual, transgender, queer, intersex, asexual community.

12 PATHLIGHT

am a gay man, an entertainer, a singer and actor, and a Christian. I’m a very spiritual person. These days I work as the choir director for a local church, but I have sung on Broadway and toured nationally with several productions, including as Old Deuteronomy in “Cats.” I live in northern Virginia with my 91-year-old mother.

I had to stop touring when my PAH symptoms started getting bad. I would nearly black out while trying to hold a note.

It took about five years to finally get the right diagnosis. When I first heard what it was, all this information made me think I was going to die. I drove to my cardiologist’s office in tears. My cardiologist, Zia Khan, M.D., told me, “OK now, Miss Thing, calm down.” He is a wonderful doctor who did a lot early on to guide me through my new diagnosis.

experiences of that time, such as when my partner and I learned he was HIV-positive.

My partner, who was a director in New York, absolutely didn’t want anyone to know. Although the Aids Coalition to Unleash Power (ACT UP) was big at the time, he knew opening up about his HIV status would ruin his career.

PAINFUL CONNECTIONS

In those early days, I felt incredibly alone. I knew no one with PH, and it was frightening to try to tell my family, friends and loved ones. As a 61-year-old gay man, the stigma of having something that's killing me brought back the shame and fear of the AIDS crisis.

Hearing I might have only three to five years to live brought back many painful

‘I want to try to find the queer community within PHA’s community and reach out to them.’

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FEATURE

FEATURE

Sydney Ward

I

Left: Stephen motivates participants April 16 in the Northern Virginia O₂breathe fundraising walk.

Above: Stephen with PHA’s Zan Laughlin.

Some of those same fears came back with my PAH, such as not knowing how to explain it to other people — especially when I thought I wouldn’t have many more years left.

I’m mostly very “out” about my PAH. It’s something more people need to know about, and I love to tell my story to anyone who will listen.

FEELING ISOLATED

When it comes to dating, I still find myself feeling closeted, like I can’t talk about it. PAH has had a real impact in the way I approach men or think about who might show interest in me. Often

14 PATHLIGHT

when I’ve tried to tell a guy I’ve been talking to that I have PAH, explain how I can’t do stairs very well, or have these limitations, they’ll just drop me.

They don’t want to deal with that.

There is little queer representation within the PH community. As a single, gay man, I feel very afraid. It’s hard to feel loved or that anyone will be there for me, and it becomes difficult to heal or stay optimistic.

When I’m advocating for myself, going to doctor appointments alone, or waiting hours on the phone and not getting help I need, sometimes I feel like it’s not worth the fight. There’s a feeling

of isolation at the society level.

What drives me now is helping others and raising awareness about PAH. I want to try to find the queer community within PHA’s community and reach out to them. I want to bring hope and joy and a bit of laughter to another gay man or woman or nonbinary person. If we can laugh with each other, then I’ve done my job.

Life as a queer person with PAH is really hard, but I want to give the message that it gets better. If I can inspire even one person, then I know I’m doing the right thing.

live outside of Minneapolis with my partner Tom and our two cats, Luna and Pandora. I am bisexual and nonbinary, specifically gender queer. My pronouns are she/her/hers and they/them/theirs.

I run a business that provides tarot readings, Reikibased energy healing, mentorship and workshops on meditation and other spiritual topics. I’m a firm believer in modern medicine and treat my work as complementary to conventional science-based therapies. I also work part-time as a yoga instructor. The wellness center has been wonderfully supportive in allowing me to show up at work as my whole, authentic self.

I have idiopathic PAH and publicly identify as disabled.

I find “dynamically disabled” feels especially apt and reflects my varied abilities depending on the day. I recently was diagnosed with ADHD and have noticed how this condition has affected my ability to get care. It makes it more challenging to schedule tests several months out and to remember appointments, especially with care facilities that rely on a lot of automation and less direct, personal interaction and outreach.

Being nonbinary also affects my PH care. I mention my identities when the situation feels natural, and I’m open about them if someone asks. However, I choose not to be

out about my gender with my care team. They all use she/ her pronouns for me. I haven’t told them I also use they/ them/theirs. I deal with enough other challenges in receiving quality care, so I’ve chosen to let this go due to the selfadvocacy fatigue many of us deal with.

TREATMENT CHALLENGES

I’m not on certain treatments anymore because I feel infantilized being observed when taking a monthly pregnancy test to continue the prescribed treatment. In one instance, my care coordinator promised to provide a lessintrusive alternative, but that didn’t happen. That, among other things, ended my trust of that coordinator. I chose

‘My experiences with PAH taught me valuable self-advocacy skills that have helped with coming out as queer.’

PHASSOCIATION.ORG 15

VOLUNTEER SPOTLIGHT

FEATURE

to get a different care coordinator and am seeking care at a more supportive clinic.

On the other hand, my experiences with PAH taught me valuable self-advocacy skills that have helped with coming out as queer. I had to learn to focus on doing the best I can for myself and the people I care about and disregard people’s assumptions — whether about my gender and sexuality or my illness and disability — that I’m “just doing it for attention.”

Some folks with marginalized identities have had to develop a thick skin and don’t care how people react to them. My experience is more about grieving the loss of my expectations and desires and becoming comfortable with the grief process than growing a thicker skin. I like caring, and I don’t want to stop caring.

in your own gender identity, events that allow more than one guest for those with more than one romantic partner, options that allow asexual people to identify someone significant in their life but not in a traditional romantic way.

For those with serious chronic illnesses, navigating this country’s medical system as a person with disabilities is already exhausting. But having a queer identity within this system makes it so much harder to receive quality care, especially gender-affirming quality care.

When communities don’t consider the needs and experiences of the full diverse range of their own members, people at the intersection of multiple identities are forced to decide, “Which one will I show up for today?

Which identity will I be present with today?”

Spreading Hope and Strength To Those With Rare Diseases NESHA RIDINGS is chair of the PHA 2022 International PH Conference and Scientific Sessions Welcome Subcommittee.

She is a medical assistant, Pulmonary Hypertension Association (PHA) support group leader and a PHA fundraiser.

those years, I worked with the most amazing, inspiring and brightest minds in the world of pulmonary hypertension (PH). I am honored to be part of the advanced lung disease program at Piedmont Pulmonary, Critical Care and Sleep Medicine in Atlanta.

SPREADING HOPE

WORDS MATTER

I would like to tell the LGBTQIA+ and PH communities, or really all marginalized communities, that access and inclusion goes beyond one community’s needs and identity.

I have been in supposedly inclusive spaces for disability or chronic illness communities that do things that exclude queer identities. Similarly, I have been in queer-inclusive spaces that don’t consider disabled folks.

Words matter. I’d like to see forms with options to fill

‘Access and inclusion goes beyond one community’s needs and identity.’

BY NESHA RIDINGS

I

t is my honor to chair the PHA 2022 Welcome Subcommittee in my home state. The subcommittee focuses on creating concepts for the Wall of Hope, fashion show, volunteer recruitment and welcoming of all attendees with conference meeting essentials. I was excited to accept this opportunity and look forward to seeing every PHriend in Atlanta.

I can’t wait to see in person what this year’s conference has in store for participants. I think it will be an experience to remember.

ABOUT ME

JOIN THE LGBTQIA+ COMMUNITY AT PHA 2022 Find connection and conversation within the queer community at PHA 2022 International PH Conference and Scientific Sessions. Join the first LGBTQIA+ mixer for members of the pulmonary hypertension community at a Pulmonary Hypertension Association conference. The mixer is set for 9 p.m. EDT, Friday, June 10 at Twenty-Two Stories, a restaurant and bar in the Hyatt Regency Atlanta. ⊲

Reserve your space when you register at PHA.org/PHA2022

16 PATHLIGHT

I’m a free-spirited, warm-hearted and caring person born and raised in Georgia. Here, southern hospitality can be shared over a glass of icecold sweet tea, and the traffic is so challenging that part of our highway is called “spaghetti junction.”

I have worked in the health care industry for over 16 years. For 15 of

I enjoy giving back to the community while spreading hope and strength to others who might need help with their chronic or rare diseases.

The best part of my life is teaching people how to advocate for themselves, whether they’re applying for grants, asking manufacturers for financial aid, requesting cheaper alternatives when appropriate, or seeking community resources. I’m not one to shy away from fighting the good fight with insurance companies to obtain what the doctor ordered instead of a formulary decision.

In 2019, I was inspired to start a PHA support group after attending several meetings hosted by the late Sally Maddox, Ed.D. The support group meetings and events were so engaging and filled with compassionate, caring people that they made me want to start a support group.

Mine would meet during the week while Sally’s met on weekends.

I attended all the meetings I could and raised $1,500 to $2,000 every year in fundraising events. Our team attended seven events and received

‘The best part of my life is teaching people how to advocate for themselves.’ plaques at each one in recognition of our team accomplishments.

After three years of volunteering, PHA asked me to host a virtual fundraising event in 2021, and it was a success. PHA made it simple for me to be the host remotely, and I enjoyed having the support group portion of the event live streamed. It was meaningful to connect with others throughout the nation.

PHASSOCIATION.ORG 17

FEATURE

Son’s PH Helps Pediatrician Better Understand Her Patients

DUAL ROLES: Patients

and Caregivers as Clinicians

Your doctor or nurse might have been inspired to focus on pulmonary hypertension care because of personal connections to patients. For some health care providers, those connections are more than personal: They or a family member has PH. In this story, we talk to Chandani DeZure, a pediatrician whose son has PH; Allison Dsouza, a nurse whose career was inspired by the nurse who helped her transition to adult PH care; and Sara Lambirth, a nurse whose PH made her switch to clinic from floor work but also made her more empathetic and patient.

Photos: Portraits by Michelle Lynn

18 PATHLIGHT

CHANDANI DEZURE, M.D., is a pediatrician in the neonatal intensive care unit at the Lucile Packard Children’s Hospital Stanford. She specializes in caring for hospitalized children and newborns, including premature infants in the ICU. She lives in San Diego with her husband and two sons.

BY CHANDANI DEZURE

I

t’s incredibly challenging to manage a medically complex child, pregnancy and moving to a new city with two young children. Add in the challenges of working as a frontline health care worker during COVID and managing the regular responsibilities of a high-pressure job.

It’s given me a new perspective that truly focuses on the most important things in life and prioritizes our family time.

FAMILY PRIORITIES

My son Ryan, 3, was diagnosed in July 2020 when he was 2. His medical team believes he has idiopathic pulmonary hypertension (PH), Group 1.

My son’s diagnosis has meant a lot more doctor’s appointments, hospital visits, procedures and imaging than we ever imagined. My husband and I work well together at coordinating and organizing these things as a team.

I’ve cut back on my work to spend more time to accommodate my son’s needs and prioritize time together as a family. Our family appreciates experiences over material things, and we will continue to celebrate our time together going forward.

PHASSOCIATION.ORG 19

FEATURE

FEATURE

‘I’m the best physician I can be because of having a child with PH.’

20 PATHLIGHT

Our employers have been tremendously supportive, and we’ve had to advocate for ourselves to ensure our work-life integration is in a healthy place. There is still so much love and laughter and happiness in our home. My son has shown me what an incredible resilient soul he is, though I wish he didn’t have to live in a world that needed him to be so brave.

PHYSICIAN ADVOCATE

I’ve always worked with children, including sick children in the ICU. I

felt that I could understand families’ concerns and feelings, but until my son became a patient, I had never seen the medical system from the patient lens.

The system is broken beyond repair.

As a parent of a sick kid, I have to constantly advocate for my family with physicians, nurses, insurance companies, surgeons, teachers, schools, therapists and pharmacies. And I am sometimes unsuccessful. When I go to work as a physician, I’m consciously aware of the many challenges families face.

I do my best to advocate for these families as a physician and a mom and to deliver family-centered care. I’m the best physician I can be because of having a child with PH. While I wouldn’t wish a sick child upon anyone, being a patient or parent of a patient can be incredibly eye-opening to see the cracks in the medical system. Now, I’m better equipped to fill those cracks for my patients.

Like I mentioned, our family is full of love, laughter, happiness and hope. But it’s on a backdrop of a poor prognosis for a young child with an incurable disease. There are also pain, grief and tears in our family.

Caregiver fatigue is real and exhausting, so it’s important to find a support system for you and your family that works.

Other people can try to help, but sometimes they just don’t get it. It’s not their fault. Know that the Pulmonary Hypertension Association can be an invaluable resource for your family.

Asking for help isn’t a sign of weakness.

It’s OK to ask for help. It’s also OK to not be OK.

Nurse’s PH Inspires Hope After Hospitalization ALLISON DSOUZA, B.S.N, R.N., works in the cardiac intensive care unit at Children’s Hospital of Pittsburgh. She was diagnosed with pulmonary arterial hypertension (PAH) in February 2015 as a senior in high school. Previously, she was a registered nurse on the advanced lung disease and lung transplant floor, where she cared for some pre- and post-transplant PH patients.

BY ALLISON DSOUZA

G

rowing up, I always knew I wanted to be in health care.

My PAH diagnosis confirmed my decision. It was the first time I saw what nurses and doctors do. About a year after diagnosis, I spent the summer shadowing my nurse practitioner, Elizabeth Colglazier. After seeing the roles of many different providers, I decided that I wanted to pursue nursing with the hopes of one day being a pediatric PH nurse practitioner like Elizabeth.

Elizabeth has always been a huge inspiration for my nursing journey.

Throughout my PH journey, she was always a text away, whether it was 2 a.m. or Christmas Eve. With my patients, I try to emulate her kindness, neverending support and sense of humor.

ADVOCATING FOR MYSELF

Going into health care has been one of the best decisions I’ve made but the path hasn’t been easy. When I first started at UCLA’s School of Nursing, I was on around-the-clock oxygen. My professors thought that I wouldn’t be able to be a nurse but decided to give me

a chance. I proved them wrong when I excelled in school and graduated at the top of my class.

I had to advocate for myself to make sure my classes and clinical training would set me up for success. I avoided long commutes to clinical sites and night shifts. I love nursing because there are so many options and specialties, and you don’t have to stay in one role forever.

CONNECTING WITH PATIENTS

My diagnosis has positively affected my work as a health care professional, and I feel a strong connection with my PH patients. When I work with pulmonary patients, I’m one of the few nurses who knows how it feels to struggle to breathe. In the pediatric cardiac intensive care unit, I have many patients with PH. Working with these kiddos made me realize how serious of a disease PH is. They often are the sickest patients I see.

It is always great to see the wide eyes of a patient or parent when I tell them I have PH, and I’m also on subcutaneous Remodulin therapy. It gives them a

sense of hope that there is a life after hospitalization. I make it very clear that everyone’s journey is different, and we all respond to therapies differently. I want my pediatric patients to know that they can pursue their dreams despite many of the challenges that their diagnosis may throw at them.

FOREVER THANKFUL

As an R.N., I’ve learned to care of myself first to provide the best care for my patients. That means I need to take my diuretics at work, and I ask for help when I’m not feeling the greatest. Being an inpatient nurse is very physically taxing. Stepping down to the pediatric cardiac intensive care unit has been much easier on my body.

I truly love what I do, and that gets me through the most difficult days.

This path is by no means easy, but it is so worth it in the end. Without PAH, I would not be the nurse I am today, and for that, I am forever thankful for my diagnosis and for being a part of this amazing PH community.

PHASSOCIATION.ORG 21

FEATURE

FEATURE

PAH Helps Nurse Better Care For Her Patients

BY SARA LAMBIRTH

Growing up, SARA LAMBIRTH knew that she wanted to help people and make a difference.

Now, she works as a registered nurse in the progressive cardiac telemetry unit at Novant Health Rowan Medical Center in Salisbury, North Carolina. In 2012, she was diagnosed with pulmonary arterial hypertension (PAH). Sara shares how she manages her PAH at work and how it helps her better care for her patients.

I

n September 2012, I was studying biology at the University of North Carolina, Charlotte. I noticed that I felt short of breath while walking to class every day. One day, I felt so winded, and I didn’t know why. When I got to my building, I felt sick to my stomach, extremely short of breath and lightheaded.

While I was walking down the hall, I suddenly lost function of my legs and collapsed on the floor. Someone helped me and took me to the campus health center where I checked out fine. Weeks turned into months, and I noticed my condition was worsening. I couldn’t walk 10 feet without passing out. I went through several tests, and the doctors were baffled. I was told I was fine, even though I knew I wasn’t.

RECEIVING A DIAGNOSIS

Two years after the first incident, I was fainting at least once a day. I started researching my symptoms online and came across something called pulmonary hypertension (PH). I found a new doctor and told him that I thought I may have PH. He ordered a right heart catheterization, and I was diagnosed with idiopathic PAH. Even though I had done research and knew deep down I had PH, I didn’t know how to respond to the news. I was put on oral medications and met with a pulmonologist. But as months went by, I still felt short of breath, lightheaded and fatigued with fainting episodes. I was sent to a PAH specialist and put on IV Veletri. I never thought I’d be on lifelong medication and be constantly hooked up to an IV. Almost 10 years later, I’m still breathing and pushing onward. PAH has become a lifelong friend that I have to deal with. Sometimes we have good days, and sometimes we have bad days. While I was working as a nursing assistant, I knew I wanted to do more.

In 2017, I graduated with my nursing degree.

Left: Sara Lambirth with husband Kevin.

Opposite: Sara with her coworkers (from left) Paula, Sara, Niya and Jennifer.

22 PATHLIGHT

WORKING WITH PAH

My managers and coworkers are really accommodating, helpful and nonjudgmental about my PAH. I didn’t know if I was going to be able to work at first, but it was possible.

I need to take occasional breaks to catch my breath, especially if I have a heavy assignment or if my legs or feet are cramping from medication side effects. I had to switch from working as a floor nurse to a clinic nurse because my PH medication affected my ability to stand for 12 hours.

I wear my pump in a fanny pack and give the infusion tubing just enough slack so it can’t be pulled on.

My Hickman line can get kinked from constantly moving, squatting and stretching at work. I take the challenges as they come. If I get short of breath, I pause until I can resume my activity. I wish people knew that just because you don’t look sick doesn’t mean that you aren’t.

PATIENT TO PATIENT

PAH has helped me better care for my patients. I know what it’s like for a patient with a chronic illness to have frequent doctor visits, lab work, echocardiograms, CT scans and other tests. I know how tiring and scary it can be. My Hickman site is high on my chest, so it’s easy to see the dressing.

I have a lot of patients who ask me if I’m OK, and I briefly tell them about PAH. My diagnosis has helped me be more patient and have more empathy rather than sympathy. I give my chronically ill patients the same kind of care that I want. Sometimes they just want someone to listen and comfort them. They want to be seen as people,

‘I know what it’s like for a patient with a chronic illness to have frequent doctor visits, lab work, echocardiograms, CT scans and other tests.’ not as someone who’s ill or dying.

They want to be respected and to feel like their needs are being met and understood. They’re scared and not sure what the future holds, and I can honestly say I know how they feel.

For my patients getting heart catheterizations, I can tell them how it is going to feel and not just explain the procedure. I stress the importance of taking their medication daily and how it’s ordered. I know what it’s like to miss a dose of my oral PAH medication and the effects that come with it.

Some of my patients have needed to leave the hospital with a PICC line for long-term antibiotic therapy, and they looked so discouraged.

Some people have told me they didn’t

know how they were going to change their dressings for their caths. I’ve told patients about how I change my dressings in front of the bathroom mirror. Some of my patients have told me that if I could get out and work daily with an IV and a 24/7 infusion pump attached at the hip, then they could too.

I take one day at a time and make sure to breathe. For any patients who want to pursue health care, I say that you can do it, but go in with realistic expectations and know your limits.

Each day is an opportunity to help someone else who’s experiencing the same symptoms as me.

PHASSOCIATION.ORG 23

PHA 2022

PHA 2022

GET MOVING Improve Outcomes and Quality of Life

Manage Your Career, Education and PH

Don’t miss this opportunity to improve your health.

Register at PHAssociation.org/PHA2022 to attend this inspirational and educational session.

W

Above: Aisha Woods.

Below: Dorothy Watts.

hether you’re just starting out or established in a career, a pulmonary hypertension (PH) diagnosis can present challenges to your professional life.

People with PH often are forced to decide between working parttime or full-time or giving up their careers completely. Additionally, those just starting out are left wondering how to navigate an academic environment with a PH diagnosis. These decisions sometimes are based on the difficulties of juggling doctors’ appointments with work or school deadlines as well as maintaining access to affordable healthcare.

Aisha Woods, PsyD, LPC-S, and Dorothy Watts, M.B.A., will share how they manage careers and education, despite the challenges at PHA 2022 International PH Conference and Scientific Sessions.

Aisha, diagnosed in 2015, and Dorothy, diagnosed in 2020, are among the panelists on “Having a Career with PH.” Other panelists include Darrell Randolph and Jessie Kohler, who also have PH. The session is set for 11 a.m. EDT, June 11.

Dr. Woods believes attendees can learn helpful methods to secure employment, attend school, and/or develop supportive relationships with their current employers.

The session can help those who feel anxious about returning to the office during COVID, Dorothy says. As companies prepare to send employees back to the office, there will be an adjustment for everyone, especially workers managing chronic illnesses.

However, even with the anxiety of a diagnosis during a pandemic, fulfilling employment is possible, Dr. Woods says. For example, someone with a previously physically demanding job, such as firefighter, might be about to shift that knowledge into the classroom setting by becoming a training instructor.

The session also is intended for caregivers. Caregivers know patients’ strengths and can help them figure out how to successfully have jobs and careers despite PH. “Having a career is an important part of many people’s identity,” Dorothy says. Ideally, the session can help caregivers develop a better understanding of why patients continue working and learn how to support patients’ career goals.

Register at PHAssociation.org/PHA2022 to attend gain invaluable tips from this session.

24 PATHLIGHT

L

ast fall, Lindsay Thurman ran a marathon in five and a half hours, something she never dreamed possible after her pulmonary hypertension (PH) diagnosis 14 years ago.

Like many people with PH, she battled exercise-related challenges, such as maintaining balance while walking on flat surfaces.

“Patients living with PH are often functionally limited by shortness of breath, muscle weakness, fatigue, and stigma surrounding intravenous pumps and supplemental oxygen,” says Navneet Singh, M.D., M.B.A, pulmonary, critical care and sleep medicine fellow at Warren Alpert Medical School at Brown University.

Lindsay and Dr. Singh, along with Kaye Norlin, who has PH, will discuss exercise and PH at PHA 2022 International PH Conference and Scientific Sessions. The session, “Get Moving: Exercise and Pulmonary Rehabilitation in PH,” is set for 2:30 p.m. EDT, Friday, June 10.

This breakout session will focus on ways people with PH can safely exercise at home, as well as pulmonary rehabilitation and insurance coverage.

It also will address pandemic-related obstacles to exercise.

“The pandemic has deepened the urgency to educate the PH community on the benefits of physical activity as it has limited our activities and exercise routines,” Dr. Singh says. “However, recent research has demonstrated that exercise training in PH patients can improve exercise capacity, quality of life and potentially disease-specific outcomes.”

Lindsay will discuss how new treatments helped her lungs work better. Just 22 months before the marathon, she was hospitalized because of her pulmonary arterial hypertension and unsure whether she’d recover. After her time in the hospital, Lindsay was determined to be “as physical as possible.”

“Even though I was limited by my breathing, I kept in shape with things like walking, yoga and/or strength training,” says Lindsay, who shared her story with Pathlight in March 2021.

While the session aims to help patients gain a better understanding of the connection between activity level and long-term outcomes, it also can benefit caregivers. Patients and caregivers can learn how regular exercise can become a crucial part of

managing PH, Dr. Singh and Lindsay say.

While finding an exercise program that worked for her body took trial and error, Lindsay hopes her experience will inspire PHA 2022 attendees.

Dr. Singh will encourage patients to work with their care teams to define appropriate exercise programs to improve their functional capacity and address exercise-related challenges.

PHASSOCIATION.ORG 25

HEALTH MATTERS

HEALTH MATTERS

Notify your health care provider before planning your trip. You might need additional authorizations to ensure you have enough medication during the trip.

1

Check with your airline and durable medical equipment company to get the oxygen devices you need for your trip.

2

Collect all important medical documents in a single place (folder, binder, phone), and always keep them with you. Be sure your medication list is up to date, and bring it with you. Your specialty pharmacy can help ensure it’s accurate.

3

Adhere to your medication regimen, and don’t change doses without a PH specialist’s approval. Traveling from the Midwest, West Coast or overseas? Make sure you understand your medication schedule on Eastern time and other time zones where you might travel through.

4

Create an emergency plan in case of illness. Include medication-specific info, such as “Don’t stop continuous infusions under any circumstance.” Visit PHAssociation.org/patients/livingwith-ph/emergencies for templates.

5

Are you looking forward to reuniting in person for PHA 2022 International PH Conference and Scientific Sessions? If so, follow these tips to ensure smooth travel with oxygen and pulmonary hypertension (PH) medications.

26 PATHLIGHT

Consider equipment you might need, such as a wheelchair or scooter. Ask your durable medical equipment

6

company to assist with equipment rental you might need while traveling.

For Atlanta, visit heavenlywheels.com, lenoxmedicalsupply.com or scootaround.com/en/atlanta.

Check with your insurance company about coverage options while you are traveling.

You might need out-of-network care, which could require additional authorization. (Remember: The doctor at the facility providing your care while you are traveling might not contract with your health insurance company.)

7

When booking your hotel stay, request an American With Disabilities Act-compliant room to accommodate a wheelchair, oxygen or other equipment. Hyatt Regency Atlanta has a limited number of ADA hotel rooms and will distribute them on a first-come, first-served basis. The hotel will try to assign patients to lower-floor rooms, as close as possible to elevators.

8

Rest when you need to rest, and don’t feel pressured to do every activity you had in mind.

Your health comes first.

9

FLYING TO PHA 2022?

You’ll be arriving at HartfieldJackson Atlanta International Airport, one of the busiest airports in the world.

Each of its seven terminals is more than a mile long, which might make walking difficult for some people with pulmonary hypertension. If you need wheelchair assistance to navigate the terminals, tunnels and underground train, contact your airline before you depart. You will need to request airline assistance in advance for both legs of travel.

Although each airline has representatives to provide wheelchair assistance at the airport, you might encounter long lines at check-in. Make sure you arrive early in case you have to wait for a wheelchair.

Learn more at ATL.com/ ADA/#PassengerInformation.

Ask your PH provider for a copy of the “Preparing for Travel Checklist” available in the Pulmonary Hypertension Association (PHA)’s PH Practice Library. PHA professional members: Go to https://phassociation.org/ membership-content/ph-practicelibrary/for-your-patients.

10

PHASSOCIATION.ORG 27

PHA 2022

PHA 2022

PHA 2022 Drawing Scientists from Around the World Health care professionals from all disciplines will gather in Atlanta for PHA 2022 International PH Conference and Scientific Sessions.

D

Ablove: Regina Overton-Barnes

uring the Scientific Sessions, health care professionals can earn up to 14.5 hours of continuing education credit, learn about the latest pulmonary hypertension (PH) research and discuss best practices for PH treatment and management.

They’ll also have opportunities to network with other PH-treating professionals.

“This is the only conference … where patients are not only the focus of the meeting, but also attendees,” Michael Risbano, M.D., says. “This

is truly a patient-centered conference, where the professional attendees are here to help. It's a flipped script on the traditional conference approach, and it makes this conference that much more meaningful.”

PHA spoke with three members of the PHA 2022 Scientific Sessions Committee about why they plan to attend the Scientific Sessions. The committee plans the scientific portion PHA 2022 and vets content.

UNIQUE FEATURES

The multidisciplinary involvement makes PHA’s Scientific Sessions unique.

Several health care backgrounds are represented, which helps improve the care of PH patients, says Rebecca Greene, PharmD, BCCCP, a clinical

Left to right: Rebecca Greene Michael Risbano

pharmacist specialist in critical care at Rhode Island Hospital.

Dr. Risbano says no other scientific conferences provide the same focus on pulmonary vascular disease. “This conference focuses on pulmonary vascular disease topics that are right in our wheelhouse,” says Dr. Risbano, director of advanced cardiopulmonary exercise testing and head of PH clinical operations at the University of Pittsburgh Comprehensive PH Program. “It’s dedicated to diagnosing, treating and discussing all forms of PH.” The content from the Scientific

T

Sessions benefits patients, says Regina Overton-Barnes, N.P. The Scientific Sessions provide practical information health care professionals can use instantly when returning to the clinic. Ms. Overton-Barnes is a nurse practitioner in at Statcare Pulmonary and clinical coordinator at the East Tennessee Pulmonary Hypertension Center.

WORLDWIDE REPUTATION

The highly focused nature of PHA’s Scientific Sessions draws experts from around the world, Ms. Greene notes.

his year’s Scientific Sessions will feature two debates: one about initial treatment strategy for triple combination therapy and one on Potts shunts vs. lung transplant.

PHA 2022 Scientific Sessions also will include a joint PHA-Pulmonary Vascular Research Institute session on the global PH perspective and diagnosis and care management for PH groups other than Group 1.

The conference will also feature a session on the effect of the COVID-19 pandemic on pulmonary vasculature and PH care.

28 PATHLIGHT

The high-level scientific presentations related to cutting-edge PH topics is one draw, Dr. Risbano says. “But we also get to socialize with fellow fans and leaders in the field of pulmonary vascular medicine.”

The Scientific Sessions appeal to professionals from large medical centers as well as small clinics. PH professionals from practices of any size can learn practical, up-to-date information that can affect their patients’ futures as well as quality of life, Ms. Overton-Barnes says.

Ms. Overton-Barnes says she repeatedly attends PHA Scientific Sessions because of the value, quality clinical information and the latest research from PH leaders.

This year's Scientific Sessions theme is “Vision for the PHuture: The Evolving Science and Management of PH. The Scientific Sessions begin Thursday, June 9 and run through Sunday, June 12.

Register at: PHAssociation.org/PHA2022

PROGRAM HIGHLIGHTS • What We Have Learned Since PHA 2018: Updates on clinical trials, therapies and basic science advancements.

• PH Throughout the Lifecycle: Genetic testing, adolescent issues in PH. • Beyond Vasodilators: Non-medical Interventions for PH. • Role of exercise, activity tracking, remote monitoring in PH care.

PHASSOCIATION.ORG 29

DONOR PROFILE

DONOR PROFILE

Fighting a Debilitating Disease by Giving Back

BY LINDA SANTOS MORGAN

LINDA SANTOS MORGAN is a keynote speaker at PHA 2022 International PH Conference and Scientific Sessions and a member of the welcome subcommittee.

She was a co-leader of the PHA San Diego Support Group before moving to Savannah, Georgia. Linda, who has a Bachelor of Fine Arts in interior design, worked in the high-end, new custom home industry until pulmonary hypertension (PH) made working too difficult. Today, she is the Pulmonary Hypertension Association (PHA) support group leader for the greater Savannah area and advocates for the PH community by meeting with local policymakers.

F Photo: Alix Greenman/Unsplash.

30 PATHLIGHT

or years, I had been an emergency room frequent flyer for what doctors attributed to asthma exasperation.

Although I am severely asthmatic, I knew something else was wrong. My shortness of breath didn’t feel like normal asthma.

In 2006, an echocardiogram showed that my heart was enlarged on the right side. My primary care physician said my EKG readings were normal, so I didn’t need to see a cardiologist.

At the time, I couldn’t walk from my car to the entrance of my work site without getting short of breath. Once, when I had to stop midway while walking up a flight of stairs at my condo, I thought, “I guess I have gained a lot of weight.”

Before that, I had been active, running two miles a day. I enjoyed staying fit. But I began to gain weight even though I was eating healthy .

Exercising became so laborious that I stopped.

I had gone to a clinical review as part of an asthma study, and the nurse noticed my shortness of breath. She pulled out her oxygen spirometer, which showed my oxygen was extremely low. The clinicians were dumbfounded and called an EMS to take me to the hospital. I thought it surely couldn’t be serious. Boy, was I wrong.

DEVASTATING DIAGNOSIS

At the hospital, an emergency room doctor remembered seeing PH in one of the nurses about 10 years previously.

After ordering an echocardiogram and CT scan, he thought I had PH. He told me that I had two to three years to live and I should seek a specialist to start immediate treatment.

I was devastated, my parents were devastated, and my siblings were scared and in disbelief. That was a hard pill to swallow at 30 years old.

I was referred to Richard Channick, M.D. At the time, he was head of pulmonology at UC San Diego, Thornton Hospital. Three months later, a heart catheterization confirmed pulmonary arterial hypertension (PAH). The cause is idiopathic but could be familial. I started two treatments and was given hope that with advanced medication, my lifespan would be longer than the original prognosis.

My life changed tremendously. I had to carry around a large oxygen tank, leave my full-time job and go

on disability. I could no longer be independent, go dancing with my friends, have a cocktail, go running, work or date.

I went from being ambitious and self-sufficient to depending on others.

I went into a deep depression. I felt my life pretty much was ending.

CHANGE IN ATTITUDE

When I saw my PH specialist the first time, my nurse Sandee Lombardi — whom I love and adore — mentioned PHA to me and the support group she was leading. To this day she is one of my favorite nurses.

PHA is so good about keeping me and my loved ones in the loop about PH-related legislation, education and opportunities for patients and their caregivers, and support networks.

Knowing you have an organization fighting PH makes you feel like you aren’t alone.

I am excited to see how the future will unfold for the PH community. We have made great strides in treatments, and I believe in my lifetime I will see a cure.

One of my favorite PHA programs is PHA on the Road. I bring my husband, Jon Morgan, to meet other people with PH and their caregivers. He enjoys supporting me and meeting other caregivers. These one-day education sessions feel like mini conferences with patients just in your region.

GIVING BACK

I became a support group leader with Sandee Lombardee in 2011 in San Diego. After I moved to Savannah in 2013, I became the Support Group leader for the Greater Savannah area and got involved with advocacy.

This will be my fourth PHA conference, and I serve on the PHA 2022 welcome subcommittee. We meet biweekly virtually to organize the logistics of making attendees feel valued as they check in. We help at registration, Wall of Hope and other PHA 2022 activities.

Our input is vital to the success of this conference. We hope to improve, inspire and set the tone not only for the current conference but the next.

I look forward to seeing my many PH friends who live on both coasts and everywhere in-between.

DONATIONS MATTER

I donate to PHA because I believe in its mission. PHA funds conference scholarships, research and support for those living with PH, including loved ones. You can say how you want your donation used: for research, scholarships, in memory of a loved one, in honor of a living patient, or patient programs.

Any amount helps fight this debilitating disease. We patients are grateful for each and every donation.

This is a cause very dear to me.

I am excited to see how the future will unfold for the PH community. We have made great strides in treatments, and I believe in my lifetime I will see a cure.

Support PHA’s mission: PHAssociation.org/donate PHASSOCIATION.ORG 31

QUICKTAKES INSURANCE FIND

Specialty Pharmacy Feedback Form

C

ommunicating with your specialty pharmacy is important, especially when you have concerns with your prescription. Use our Specialty Pharmacy Feedback Form to relate concerns about billing or financial assistance, refill or delivery, and more, or report a positive experience. PHA will share the information with your specialty pharmacy.

Promoting the Global Impact of PH

T

he Pulmonary Hypertension Association joined more than 80 organizations around the world May 5 to mark World PH Day. PHA’s World PH Day theme this year was “Pulmonary Hypertension Has No Borders.”

The stories you shared on social media and with policy makers showed that PH can affect anyone regardless of age, sex, race, social or ethnic background.

Learn more: PHAssociation.org/worldphday.

HOW TO REACH US 301-565-3004 | FAX 301-565-3994 PHA@PHAssociation.org WEB PHAssociation.org TEL

EMAIL

Giving Back for Support and Resources

T

welve years ago, Marcie McGregor didn’t believe she would live to see her 47th birthday. On her birthday this year, Marcie credited her faith in God, her doctors and PHA for getting her where she is today. Since diagnosis, Marcie showed her appreciation by becoming a PHA volunteer and donor.

By being involved, she says she helps herself and others.

A member of PHA’s Support Group Leader Advisory Board, Marcie shared her story for PHA’s spring fundraising campaign, which began April 29.

PHA THANKS

Janssen Pharmaceuticals FOR SUPPORT OF PHA’S TREATMENT ACCESS PROGRAM.

PHA is a finalist for an AM&P Network EXCEL Awards, the premier program honoring nonprofit associations for excellence in communications.

We’ll find out in late June whether our 60-page book, “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients,” will receive a gold, silver or bronze award.

“Navigating PH” was designed to help people with PH, their caregivers and families learn more about diagnosis and treatment in the first weeks, months or years after diagnosis. The book includes checklists, resources and questions to ask doctors. It also provides information about support networks, clinical trials and quality of life issues. The guide is available online.

Those new to PH can order free copies at PHAssociation.org/newlydiagnosed, 301-565-3004 or NavigatingPH@PHAssociation.org.

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Learn more at PHAssociation.org/ donate-now.

PHA Publication Recognized for Excellence Visit PHAssociation.org/ specialty-pharmacy-feedback or call 301-565-3004 x758.

Registry Enrollment Tops 2,000 eople with pulmonary hypertension (PH) are increasingly signing on to help researchers better understand PH. Thanks to growing participation in the Pulmonary Hypertension Association Registry, researchers have better access than ever to data from people with PH. PHAR enrollment recently surpassed a new milestone with more than 2,000 patients.

The registry represents data from more than 60 PHA-accredited PH Care Centers Visit PHAssociation.org/phar.

CALENDAR OF EVENTS JUNE 4

AUGUST 27

Chicago Stride O₂breathe Walk

Northern California O₂breathe Walk

Elk Grove Village, Ill. O₂breathe.org/Stride

Great Meadow Park, San Francisco

JUNE 10-12 PHA 2022 International PH Conference and Scientific Sessions Atlanta PHAssociation.org/PHA2022

PHA thanks its national fundraising-event sponsors for their generous support:

OCTOBER 8 Georgia Fun Walk Marietta, Ga. PHAevents.org/Georgia

VIRTUAL FUNDRAISERS Visit PHAssociation.org/pha- fundraising-events to find a fundraising event in your area.

DIAMOND

PLATINUM

QUESTIONS? Contact us at 240-485-0762 or events@PHAssociation.org.

PHASSOCIATION.ORG 33

PHA’S LEGACY OF HOPE To honor those who have included PHA in their estate plans or whose legacies have been realized, PHA created the Legacy of Hope Society. PHA is pleased to recognize the following members: Laura* and Rino Aldrighetti Alice A. Arnott* Sandra A. Awood* Dauna L. Bauer* Sylvia M. Becherer* Joan F. BennettSchenecker* Kris L. Best Gloria G. Blodgett* Dorothy E. Bradley* Mary M. Brady* R. J. Braun Roberta F. Browning* and Lee A. Broadbent Rita and Bruce Brundage Colleen Brunetti Stephen Carter-Hicks Colleen and Shawn Connor Jane P.* and Harold P. Cooper James F. Corbett* Nicole M. Creech Laura H. D’Anna Charles W. DeVier, III* Linda M. Feibel* Barbara T. Gamer Stacey Gausling* Franklin D. Gillespie* Tammy A.* and Dean S. Hazen Mary Jan Hicks Carl Hicks, Jr. Phyllis M. Hill* Jackie Holt Richard L. Horrocks Constance G. Ives* Terri L. Jakuboski* Stanley T. Jusinski Laura J. Kelly* Jamses Kenney Jessie Kohler-Wenninger Terri L. Kopp* Debbie L. and Mitchell Koppelman Frank D. Koppelman* Dee* and Walter Kruger* Gloria J. Lang* Marie and Ronald J. Levendoski

34 PATHLIGHT

Mary Jo* and Thomas Linnen* Sally Maddox* Bonnie and Michael D. McGoon Joseph W. Mihuc* Linda Miles* Karen S. Moody Larry D. Moody Pamela R. Morris Marjorie D. Mott* Joyce L. Mowrer* Pamela and Timothy O’Connor Dorothy M.* and Harry J. Olson* Theresa “Terry” E. (Cavanaugh) O’Reilly* Rita and Guy Orth Patricia R.* and Gerald D. Paton* Cynthia and John R. Pickles Jean D. Pitcher* Carol L. Powell* Frances A. Price Carol J. Posner* and Marc Priore Diane Ramirez James Ryan* Louise C. and Gene P.* Salvucci Judith and Edwin L. Simpson Kelley Skumautz Marcia and Jack Stibbs Helena M. Strauch* Douglas R. Taylor Frank A. Tobac* Martha and Carlos Torres Deborah J. and Roger K. Towle Carol B. Ungar Carol E. Vreim Daniel R. Walsh* Andrea and Stephen L. White * deceased members

Passages Since the Pulmonary Hypertension Association (PHA) began publishing Pathlight, “Passages” has provided a place to memorialize people with pulmonary hypertension who pass away. PHA extends its sympathy to the families and friends of these individuals and rededicates itself to its mission in their memory.

Martha H. Bailey Joan Bland Rebecca R. Blankinship Sarafina Bracco Gwenevere M. Bush Betty J. Charles Janet L. Clark Bill Cooper Neville O. Curry Tammy M. Gilbert

Courtney E. Gillett Edna Gordon Baker Susan Harris Robbie Hughen Nina Kirby Karen Knisely-Waters Sherlyn E. Mersiovsky Hanna Moore Carol Muir Laureat G. Paradis

Lisa A. Perrotta David Popplewell Jeffrey A. Sippy Margaret Sporay Gale E. Stewart William Titus Giustino N. Valenti Jo Ann Vaughn Elizabeth Walker

An online classroom of free videos about pulmonary hypertension to help you live your best life with PH.

Watch these newly posted videos at PHAssociation.org/Classroom: The accuracy of this list is important to us. Please contact the PHA office at 301-565-3004 x746 or Passages@PHAssociation.org to share the name of your recently deceased loved one or report an error or omission.

Your donations in memory of others, in honor of others and in support of our mission mean so much to the entire PH community, and we thank you.

• • • •

Drug Discovery from Lab to Consumer (Part 1) Drug Discovery from Lab to Consumer Q&A (Part 2) Understanding the PH Drug Pipeline (Part 1) Understanding the PH Drug Pipeline (Part 2) PHASSOCIATION.ORG 35

Pulmonary Hypertension Association 8401 Colesville Road, Suite 200 Silver Spring, MD 20910

Attention PH-COPD Patients Help Advance Research Learn more about the PERFECT clinical trial for pulmonary hypertension due to chronic obstructive pulmonary disease and see if you may qualify by visiting:

PERFECTClinicalStudy.com