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

30 Days of PH: The Only Life I’ve Known
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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 is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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