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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