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PAH Trial Participants Inspire Doctor’s Passion for PH Research
pity me, and I didn’t want to ask for help.
Speaking at Conference was my “ah-ha” moment. I realized that day that I had a purpose. As nervous as I was, I could feel the emotion in the room. I was greeted afterward by other patients, who thanked me for sharing my story and giving them hope that they could live a good life.
The wheels started turning in my head, and I left that conference on a mission.
‘BANDING’ TOGETHER After speaking at PHA 2014, I made the decision that I wanted to fundraise for PHA. I knew that by fundraising for the organization, I could spread awareness and raise money for research, hopefully to find new medications and maybe one day a cure.
By fundraising, I also could keep alive my mom’s memory and keep her fight going. If I could help just one person not feel alone and give them hope for a better life, I would have accomplished something.
My family and I began brainstorming what kind of fundraiser we wanted to do. We decided that we wanted the fundraiser to involve music. Music has always been a part of our lives, so this seemed like a perfect way to bring together the community and fundraise for a disease that has affected my family significantly.
We hosted our first fundraiser, Banding Together for A Cure, in 2016 and continued the event in 2017. The event featured local bands, including the Cramer Brothers Band, which is my brothers’ country music band. We offered drawings, a photobooth, dancing and games. During our first two years, we raised more than $16,000.
After taking some time off and hosting smaller fundraisers, we had planned another Banding Together for A Cure in 2020. Unfortunately, we had to postpone the event because of the COVID-19 pandemic. We plan to host the event when it is safe.
PERSONAL CAUSE It is important to me to raise money for PHA because I’ve seen firsthand the change PHA has made over the past 30 years. The money we raise not only goes to research, but it funds PHA’s educational programs and support groups. I have had a much better prognosis and quality of life than my mother because of the advances made possible by PHA.
I am now a 20-year survivor of PH, a mother of three, a grandmother of two, and I’m living my best life.
If it weren’t for my children, I don’t know that I would have gotten this far in my fight. They are my reasons to keep going and my greatest accomplishment.
There are many things PH has taken from me but so much more it hasn’t: my love for my family and friends, summers at the beach and swimming in my pool. Watching my children reach milestones, seeing my grandchildren grow, soaking up all their smiles and laughter, having a supportive man by my side — what more could I ask for? I’ve come so far and have so much more to do. I stay hopeful that one day I will help find a cure.
I can honestly say PH has made my life more positive because I don’t take anything for granted. I don’t sweat the small stuff anymore. This is the life I was dealt, and I will keep living life to the fullest. I don’t question why any longer. I just know I was given this disease because I am strong enough to carry it.
HELP SUPPORT PHA’s mission to extend and improve the lives of those affected by PH. Visit PHAssociation.org/donate to make a gift.
Join PHA’s Fight to End PH Therapy Barriers
The Pulmonary Hypertension Association (PHA) is keeping pressure on legislators to improve the lives of people affected by pulmonary hypertension (PH). PHA’s advocacy can’t be successful without the PH community.
Learn about three PHA legislative priorities and how to join the fight:
The Safe Step Act (S. 464, H.R. 2163) would prevent people from being forced to switch to new medication from their current therapy. It also would require an expedited step-therapy appeals process. Thanks to PHA’s PH Professional Network Advocacy Day participants and other advocates, the Safe Step Act has 30 co-sponsors in the House and 108 in the Senate.
The Help Ensure Lower Patient Copays Act (HELP Copays Act, H.R. 5801) addresses a loophole some health insurance companies use to “double-dip” on copays though copay accumulator programs. Insurance plans with accumulators accept payments from copay cards or other financial assistance sources but don’t apply those payments toward deductibles. People subject to accumulator policies are responsible for their full deductibles after their financial assistance runs out. The HELP Copays Act closes this loophole so insurance companies will have to pay their fair share.
In 2021, Connecticut enacted a law to ban accumulators, thanks to advocacy from the PH community. Both state and federal action are important on this issue, and personal stories from the community are essential to success.
The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act
(S. 1512, H.R. 2903), would permanently waive restrictions on technology and locations required for telehealth. It would allow home telehealth appointments after the COVID-19 pandemic ends. PHA has been advocating for expanded access to telehealth since early in the COVID-19 pandemic. The CONNECT for Health Act now has 124 co-sponsors in the House and 61 in the Senate.
VISIT PHA’S ACTION CENTER to let your members of Congress know why these bills matter: PHAssociation.org/Advocate
If step therapy requirements prevent you from getting the PH medication your specialist prescribed, or if you have trouble paying for your PH therapy because of a copay accumulator, contact PHA to share your story. Email us at Advocacy@PHAssociation.org, or call 301-565-3004 x758.
Finding and Giving Hope
As a Volunteer and Support Group Member
BY SUE LISS
SUE LISS OF CHICAGO is a retired IT professional and the caregiver for her 96-year-old mother. After feeling hopeless at the beginning of her diagnosis, Sue found hope by leaning on her support system and now volunteers with the Pulmonary Hypertension Association (PHA). In her spare time, she enjoys her cat, crossword puzzles, computer games, reading and participating in social activities with several seniors groups.
Istarted volunteering with PHA in August 2021, taking calls on the patient support line. What an enlightening and uplifting experience it has been.
I closely identify with two issues that frequently come up on calls: “I was reading about PAH on the internet” and “Does my PAH diagnosis really mean that I am going to die?”
When I was newly diagnosed with idiopathic pulmonary arterial hypertension (PAH), I too was confused and afraid by what I read on the internet. After reading some of the sites, I was certain that no matter what I did I would be dead within six months.
Fourteen years later, I am still going strong. I believe that gives hope to callers.
SHARED EXPERIENCE As a support line volunteer, I share information I trust with people like me. They understand this disease can be complicated to explain to others. They didn’t develop this disease because they didn’t take care of themselves. They sometimes get tired even though they haven’t done a lot of strenuous exercise. They might never regain some capabilities they had before.
Although it’s fulfilling to give people information they’re searching for, the best part of volunteering is being able to say, “No, you have not just received a death sentence. I can tell you that because I am still here, taking care of my mom and swimming multiple times a week.”
One day I received a call from someone whose doctor believed she had PH. She was scheduled for a right heart catheterization and anxious. I assured her that the right steps seemingly were being taken so we talked about how she could be calmer until the procedure.
After the right heart catheterization, she called to thank me for helping her to remain calm until the procedure, which showed that she didn’t have PH.
DISCOURAGEMENT AT DIAGNOSIS My PAH journey began in 2007. I was living in Longmont, Colorado, when I started having breathing problems. I was told to lose weight and later was prescribed oxygen. A right heart catheterization, which along the way I learned was the gold standard to confirm or rule out PH, identified my PAH.
I did what so many of us do when diagnosed – I looked on the internet. Well, that left me sure that there was no point in taking any action since there was no cure and no long years of fun ahead as I would just be lying in bed waiting to die.
FINDING STRENGTH Thank goodness I have a strong support system of family and friends who didn’t let my mind go down that road. With much support, I came to believe that no one knows when their time is up, so I might as well just live my life for however long that may be.
I started asking my doctors more questions: to draw me pictures and tell me in layman’s term what was happening with my body. I also asked them what I could do.
When I started on oxygen, I used it at night and with physical activity. I was using three liters of oxygen in those days. By the time I left Colorado, I was on six liters of oxygen at rest and eight to 10 liters with activity.
Since moving back to Chicago, I am on three liters at rest and four or five liters with activity, such as swimming. I take ambrisentan and sildenafil.
DISCOVERING SUPPORT I had excellent medical care in Colorado. However, I didn’t look into support groups, and no one spoke to me about them. I always felt alone trying to understand what was happening with my body and feeling that I somehow brought this on myself.
After I moved back to Illinois, my medical team provided me information about PHA and its support groups.
The support groups help keep me balanced. There is usually someone dealing with more than I am and others dealing with less. Someone usually is dealing with what I am, which gave me the confidence to get back in the water and swim.
I have always been very active. At one time I owned a horse and rode several times a week. When I wasn’t horseback riding, I was bicycling or walking. I grew up in a family that truly enjoyed swimming. I have been a swimmer since I was 5 or 6. I loved hiking in the mountains, walking around my town and swimming.
Although mountain hiking is no longer an option for me, I am back to swimming as I did before my diagnosis and enjoying it very much.
If you’re a patient or caregiver and would like to connect with a PHA volunteer, call PHA’s Support Line at 800-748-7274. If you’d like to apply to volunteer, visit PHAssociation.org/get-involved/volunteer.
