30 Days of PH: The Only Life I’ve Known

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by Jen Cueva |

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Day 10 of 30 Days of PH⁣⠀ ⁣Topic: The only life I’ve known ⁣⠀ ⁣This is Colleen’s story @mittens1202⁣⠀ ⁣⠀ Shortness of breath, fatigue, blue lips, fingertips, and toes, dizziness. I don’t know what it is like to live without these symptoms. I was diagnosed with Pulmonary Arterial Hypertension when I was 9 months. This was after a doctor told my parents twice at a free clinic for shots, that something was wrong with my heart. At that time in the mid-70s, they only had a name for PAH, nothing else. ⁣⠀ ⁣⠀ I happened to have it because of a pretty significant heart defect called atrioventricular canal( AVC). That could not be fixed, either. Doctors told my parents that they had no idea how long I would live. They told them to just bring me home and love me for as long as they could.⁣⠀ ⁣⠀ ⁣Fast forward 44 years, that’s how old I am now. Somehow I made it through my childhood, adolescent, and young adult years with no major issues. Somehow I was “lucky” enough to be living not only with an illness that only happens to about a handful of people out of a million. But also, to have a subcategory of PAH known as Eisenmenger’s Syndrome. That category is even tinier. Gosh, do I feel special! ⁣⠀ ⁣⠀ But in my mid-20s, my usual symptoms described above became worse and started to include a resident elephant sitting on my chest. Not knowing what else to do for me, my primary doctor asked me to go to the Cleveland Clinic for a possible lung transplant. I started going there in 2002, and I continue to go today. ⁣⠀ ⁣⠀ A transplant has not been an option for me yet, as I was started on Tracleer in 2003, and added Revatio in 2007. Both meds have played a significant role in keeping my PAH stable. I was able to eventually add pulmonary rehab to my weekly routine, where I also exercise on my own at home. ⁣⠀ ⁣⠀ I lead a fairly active life thanks to the meds, except that I don’t work. But, I am ok with that! My time is spent leading a PH support group, volunteering at a nursing home, crafting, and being there for my family and friends. PAH isn’t always easy to live with, and I have some days worse than others, but it’s been the only life I’ve ever known. And I feel blessed to be here!

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Jen Cueva Jen Cueva lives in San Diego, California, with her husband and daughter. Jen worked in nursing before the script changed upon her diagnosis of pulmonary hypertension (PH), group 1, in 2005. Advocacy has been essential to her life. Her passion is to instill hope and remind others in the PH community that they are not alone. To do this, she serves as a forum moderator for Pulmonary Hypertension News and in her weekly column she delves into the roller coaster of emotions that accompany PH. It is powerful and meaningful to her to have this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey. Together, we PHight stronger!

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30DaysofPH, awareness, Eisenmenger Syndrome

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