Progress in Pulmonary Hypertension Treatments Brings Miracles Closer
I often wonder what would have happened had I been born at an earlier time. If my life had taken form even a decade earlier, my story would have looked much different.
Had I been a child living with pulmonary hypertension (PH) in the early 20th century or before, I assume my life span and experiences would have been much more limited. It often feels like I was born on the cusp of progress and hope for those facing a PH diagnosis, making the cut just in time.
From 1999 to 2018, I benefited from technological and medicinal advances at every turn. During my 19 years of living with PH, I battled great frustration with the stagnant and fruitless search for a cure. But I also had the incredible ability to witness the evolution of management of pulmonary hypertension treatments within the patient population as the years passed.
Along my journey, I experienced medicines that improved my health and devices that improved my quality of life. I went from a large intravenous pump carrying medicine that required ice packs 24/7 to a small device the size of my cellphone that I could slip into the waistband of my pants. I even witnessed PH peers who were able to transition from IV treatments to subdermal and even oral medications.
While these logistical improvements didn’t change my long-term prognosis, they were still monumental and greatly affected my quality of life. Being a seventh-grader with a medical device that went from highly visible to barely noticeable was a major success for me.
Looking back, while these advances seemed slow at the time, it’s amazing to realize the actual progress I was a part of. I even have clear memories of participating in early clinical trials for medications that are now foundational for the average regimen of pulmonary hypertension treatments for newly diagnosed patients.
After receiving a heart and lung transplant in 2018, I came to terms with a strange facet of grief that rested somewhere deep within me. It was the realization that, should a cure for PH be discovered, I would no longer be able to receive it.
My transplant saved my life, but the best solution is not to need one in the first place. And while that’s something I can no longer hope for, I dream about it for everyone else who is still in the battle. Finding a cure for PH will be the ultimate victory for so many, including those who were unable to finish their fight.
The progress I witnessed hasn’t yet led to a cure. I now find myself hoping for progress in the separate realm of lung transplant. But my history gives me hope — both for the PH community and the vast world of complex illnesses it is a part of. Knowing all that has changed in the past 20 years can only generate optimism for all the stories to come.
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.
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Cactusflower Desertfox
Been diagnosed for PAH over a year ago , but don't feel I am being treated for it.