On the slow journey toward a cure, every day with PH matters

My mom was quick to share her dream with me from the night before when I came downstairs for breakfast on a recent morning.

In the dream, I was still living with pulmonary hypertension (PH), and we were sitting with a group of our close PH friends. Everyone seemed to be responding to one medication or another — except for me. As others got better, I grew worse.

Anyone who is part of the PH community will know that the worries in this dream are not far from reality, unfortunately. The disease, while always considered terminal, can progress at very different rates, depending on the person. Additionally, some people respond to oral medications, while others do not. For this group, IV therapy is needed, a much more aggressive form of treatment.

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I still have hope

Attending the Pulmonary Hypertension Association‘s International PH Conference always left me a bit confused about why I had a worse case of PH than someone else my age. But I also had a great deal of survivor’s guilt as the years passed and a number of my peers passed away — a fate that I, for no reason, had managed to dodge.

One of the most challenging things about PH has been seeing my hope repeatedly destroyed. I’d try a new drug or a new dosage, only to discover it made no difference. Or I’d feel hopeful when something made me feel better, only to find out my numbers were still trending downward. I won’t sugarcoat how sad it is to live with an illness for more than 25 years and to see so little progress toward a cure.

I’ve been paying more attention, however, to clinical updates happening lately in the world of PH, pausing to read the headlines as I scroll through my social media feed. For many years, it felt like the same treatments and trials were being written about, but with little to no success. Lately, though, I’m seeing that some truly new avenues are being explored. It gives me hope that one day researchers will manage to hack the right equation for success.

Until then, I encourage anyone living with PH to take control where they’re able to find it.

In the years before my heart-lung transplant, I made sure to ask about clinical trial opportunities at every meeting with my care team. I was fortunate, too, to have parents who persistently did their own research about treatment updates. We were never shy about bringing these to my doctor, always pushing for any adjustments that could help me feel even a tiny bit better.

It can be hard to make sense of why some things work for some people and not others. It can be especially demoralizing in the end stages of the disease, as options run out.

It’s my dream that there is a cure and that the need for this conversation becomes obsolete someday. But until then, I will always encourage patients to take as much control as they can over their care and ask questions about what they can do. With an illness like PH, every day matters, and so do any improvements in clinical presentation and quality of life.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.