7 minute read
Can You Benefit From Palliative Care?
Living Each Day to
The Fullest in Mexico City
ADRIANA POSADA is a longtime Pulmonary Hypertension Association (PHA) volunteer. She is a PHA PHriend, providing support and information by email to people newly diagnosed with pulmonary hypertension (PH), and she leads the PHA support group in Mexico City. She was diagnosed with idiopathic pulmonary arterial hypertension (PAH) in 2005. At the time, she was 41 with 8- and 11-year-old daughters. Since then, she advocates for treatment access and financial assistance for people with PH in Mexico and spreads PH awareness internationally. Adriana shares her story to promote World PH Day on May 5.
BY ADRIANA POSADA
Photo: Carlos Aranda/Unsplash. Iwas exercising at the gym when I had my first of three fainting spells in four months. The next time, I was dancing at my birthday party. I had been experiencing shortness of breath, extreme fatigue and chest pain. I lost my health in a very short time.
After I was diagnosed, I realized I needed to learn about idiopathic PAH, as well as PH in general. I also focused on getting to know myself better and using the power of my mind to relax my body. In those years, there were only four treatments for PAH, and I was privileged to get one of them.
Over the next few years, I shared my “new me” with other PH patients all around the world. In addition to being a support group leader, I volunteered for several PH associations and produced a Spanish-language blog for people with PH and caregivers. I call my PH “the health project” because I am not the illness.
I’ve had the chance to visit many countries and understand that people in every country have the same challenges finding treatments for this rare disease. That’s why I work to spread awareness of the illness, the symptoms and tests people need to be diagnosed.
I am from Mexico City, where I still live, because family is priceless. My daughters live here, as well as my mom, sisters, brothers-in-law, nephews, uncles, cousins — and now a little piece of life: my 3-month-old grandson. He lights up my life and gives me hope to carry on.
He changes my thoughts because I’m always thinking about how he is, when I can see him, and when I can kiss his cheeks and hug him without a mask. I no longer worry about how long I might live because I live every day one day at a time.
My most difficult moments have been facing the loss of a PHriend and trying to access certain medicines in my country because we don’t have all the PH treatments available in the U.S.
After 10 years, my cardiac output had decreased, and I needed an atrial septostomy in August 2015. After that, I had to start over to increase my physical activity. I take oxygen 24/7. I got divorced in 2018 after almost 30 years of marriage, so 2019 and 2020 were hard times. But I had strength to live the best I could.
In 2021 got sick with COVID-19. I was treated at home, isolated but full of love, prayers and care from my daughters, family, and friends. Those days of pain and sorrow helped me to forgive and love myself and others.
There will always be challenges to live with this rare disease. I have met with policymakers in my country to advocate for insurance coverage of PH treatments. The costs are so high that all treatments are luxuries in Mexico.
I hope these words bring other PH patients faith so they don’t feel afraid. Your own journey could be easier now that research has led to more treatments and cardiac surgeries. When I was diagnosed, only two PH genes had been discovered, but now we know so much more.
I am thankful to the researchers, physicians and nurses who help us learn more and provide the best treatment possible to make us feel better, better and better each day.
To my friends with PH, know that you are not alone.
Help Build Global PH Awareness
Each May, the Pulmonary Hypertension Association joins people with pulmonary hypertension (PH), their families, health care professionals and PH organizations throughout the world to mark World PH Day on May 5.
World PH Day draws attention to PH from a global perspective. In the United States, people with pulmonary arterial hypertension (PAH) and left heart disease represent 71% of all cases of PH.
But that’s not the case in many other countries. In Africa and Asia, schistosomiasis is the most common way to acquire PH. Schistosomiasis is spread by a parasite in water used for bathing and recreation.
Although PH-related challenges vary by country or geographic region, the fight is the same globally. No matter where you live, share your stories to broaden recognition of PH symptoms, emphasize the importance of early diagnosis, improve access to quality care and effective treatments, and identify trusted, credible informational and educational resources.
Visit PHAssociation.org and worldphday.org in May for resources and more information.
QUICKTAKES
Support Group Leader Advisory Board Names New Members Share Your Medication Disruption Stories
The Pulmonary Hypertension Association (PHA) welcomes two new members to its Support Group Leader Advisory Board. Laura Hooley and Marcie McGregor join Diane Ramirez, Nikole Nichols, Tina Stiyer, Pat Ofori, Monica Penaranda, Mike Robinson and Debra Hines.
Laura and Marcie replace Evette Britton and Lindsay Collins.
The Support Group Leader Advisory Board consists of nine support group leaders: eight patients and one caregiver. The advisory board plans and implements programming for the support group leader network. Members also operate regional networking groups, which act as a special support program for PHA support group leaders.
Pictured top to bottom: Laura Hooley, Marcie McGregor. Medication interruptions can be life-threatening, and sometimes even a few hours can significantly affect your well-being.
If you had to go without your prescribed pulmonary arterial hypertension medication in the past year because of insurance obstacles or billing or shipping challenges, the Pulmonary Hypertension Association wants to hear from you.
Call 301-565-3004 x 758 or to share your PH medication gap experience at Advocacy@ PHAssociation.org. Your story can help make a difference for the pulmonary hypertension community.
How to Find Financial Assistance For Treatment Costs
The Pulmonary Hypertension Association (PHA) Treatment Access Program maintains a guide to financial assistance resources, including copay assistance programs.
One valuable resource for anyone searching for copay grants is the PAN Foundation’s Fund Finder, where you can sign up for email or text notifications as soon as a pulmonary hypertension charitable assistance fund opens. Sign up for Fund Finder alerts by calling 866-316-7263 or visit fundfinder.panfoundation.org.
Contact PHA’s Treatment Access Program for more information about financial assistance resources by calling 301-565-3004 x 758, or email us at Insurance@PHAssociation.org.
Thanks to Janssen Pharmaceuticals
FOR SUPPORTING PHA’S TREATMENT ACCESS PROGRAM
HOW TO REACH US
TEL 301-565-3004 | FAX 301-565-3994 EMAIL PHA@PHAssociation.org WEB PHAssociation.org
Summit Explores Ways To Raise Awareness, Reduce Barriers
The Pulmonary Hypertension Association (PHA) is working with other rare disease organizations improve the understanding of pulmonary hypertension (PH) and reduce barriers to diagnosis among at-risk groups.
Last fall, PHA launched the Associated Conditions Partner Summit with organizations that focus on conditions associated with PH. The five-hour summit was conducted by video call.
Those attending included staff, volunteers and patients from Cure HHT (hereditary hemorrhagic telangiectasia), Adult Congenital Heart Association, Scleroderma Foundation, Pulmonary Fibrosis Foundation, the Foundation for Sarcoidosis Research and the Cystic Fibrosis Foundation. People with those conditions have a greater risk of developing pulmonary hypertension.
Participants discussed ways to enhance understanding of PH through joint education and improve outcomes through collaborative awareness and advocacy activities.
Health care providers expressed the need to better understand the challenges to diagnosis through crosstraining with PH clinicians. Anna Hemnes, M.D., chairelect of the PHA Scientific Leadership Council, provided an overview of the types of PH and related diagnostic tests along with treatment options.
Representatives for industry sponsors Janssen Pharmaceuticals, United Therapeutics and CVS Specialty also attended. PHA plans to hold the event every year.
CALENDAR OF EVENTS
APRIL 9
Southern California O₂breathe Walk Long Beach, Calif. O₂breathe.org/SoCal
APRIL 23
Northern Virginia O₂breathe Walk Alexandria, Va. O₂breathe.org/NOVA
MAY 5
World Pulmonary Hypertension Day Online
MAY 21
Boston O₂breathe Walk Cambridge, Mass. O₂breathe.org/Boston
JUNE 4
Chicago Stride O₂breathe Walk Elk Grove Village, Ill. O₂breathe.org/Stride
JUNE 10-12
PHA 2022 International PH Conference and Scientific Sessions Atlanta PHAssociation.org/PHA2022
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.
QUESTIONS?
Contact us at 240-485-0762 or events@PHAssociation.org. PHA thanks its national fundraising-event sponsors for their generous support:
DIAMOND
PLATINUM
