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A myPHteam Member asked a question 💭
Van Etten, NY
October 8, 2025
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Answer Summary

Members reflected on the deeply personal question of life expectancy with pulmonary hypertension, with many emphasizing that rather than... Read more

Members reflected on the deeply personal question of life expectancy with pulmonary hypertension, with many emphasizing that rather than focusing on timelines, they choose to live fully in the present and trust that new treatments and clinical trials continue to offer hope. Several members shared practical medication experiences, including the excitement around Winrevair for Group 1 PAH and its potential approval for Group 2 PH, the value of CardioMEMS implants for real-time pressure monitoring without repeated invasive tests, and the critical importance of accurate diagnosis after one member narrowly avoided serious harm from being misclassified and placed on the wrong medications. A recurring theme was frustration when doctors avoid giving clear answers about prognosis or risk scores, balanced by gratitude for specialists who take the time to review cases thoroughly and adjust treatment plans accordingly.

A myPHteam Member

Life expectancy for PH varies quite a bit. There are so many factors that determine how long an individual with PH will live. Many people have other comorbidities that impact their health. A lot of people diagnosed are older in age. Some respond well to medications, others do not. Rather than focus on my expiration date, I try to stay focused on the here and now, making the most of each day.

October 8, 2025
A myPHteam Member

When first diagnosed, I was very concerned with life expectancy. Living with PAH, and a little faith in the Lord, has allowed me to grow beyond that and to simply take each day as it comes and when it’s my time, so be it.

October 8, 2025
A myPHteam Member

I don't know which PH sub-group you are in...but Winrevair is a real game changer already for many people with PAH Group 1. hopefully it will also be the same for Group 2 PH due to Left Heart Disease.

https://www.merckconnect.com/winrevair/

WINREVAIR™ (sotatercept-csrk) | Official Healthcare Professional Site
WINREVAIR™ (sotatercept-csrk) | Official Healthcare Professional Site
October 9, 2025
A myPHteam Member

There are several in clinical trials now. Several people on this site are involved as subjects in those trials. I turned down being in one because the testing throughout the trial for monitoring purposes was too tedious for me to go through due to stresses I had at home at that time.

The one I am most excited about though is the hope of getting Winrevair approved for Group 2 PH for this coming Spring.

Also, most drugs are not assigned publicly revealed names until they reach Phase III in clinical trials.

October 9, 2025
A myPHteam Member

And there are new medications coming out all the time. PH is now a popular illness for pharmas and doctors to research.

October 8, 2025

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A myPHteam Member asked a question 💭