30 Days of PH: What PH Has Taught Me - Pulmonary Hypertension News
30 Days of PH: What PH Has Taught Me - Pulmonary Hypertension News |
| 30 Days of PH: What PH Has Taught Me - Pulmonary Hypertension News Posted: 28 Nov 2020 07:00 AM PST
Day 28 of 30 Days of PH This is Jacque's Story @jacque.wilkinson Even with all the negative that comes with this disease, it has taught me so many things. First, it taught me to slow down. I was an active single mom of 4 small children when I got diagnosed. And my life flipped upside down. It hasn't been easy, and this is something I still struggle with today, but I know I have to listen to my body and take it easy, or I will definitely pay for it later. PH has taught me to ask for help. This is something that doesn't come easy to me at all. It has always been me and my children against the world. Now, it's me, my children, and my family against the world. PH has shown me who truly deserves a place in my life, and as much as that hurts sometimes, it's worth it. My parents have literally turned their lives upside down to make sure my babies are taken care of, so I can take care of myself. It has taught me to fight, truly fight. After dealing with the diagnosis itself, several bouts of pneumonia, sepsis, and most recently COVID-19, I truly learned the meaning of strength. Even when I wanted to lie down, I knew I had to get up and fight every single day. Even when it's hard – that's when I have to fight the hardest. The meaning of the word "fight" changes when it's your life you are fighting for. Along with all the bad PH has brought into my life, I have learned to find the positive in things as well. It has brought us closer as a family, and that I am thankful for. It has taught me to see the positive in everything, even when it's hard. To not take things for granted, because it can change in the blink of an eye. I never dreamed I'd wake up sick one day, and never get better. Lastly, it has taught me that sometimes it's okay not to be okay. It's okay to feel sick, it's okay to be sick. It's absolutely nothing to be ashamed of. Having PH is like swimming upstream every minute you are awake. You rarely get relief. You rarely feel okay. Even when you do, most of the time it's short-lived. But despite it all, we keep going, And that is the true meaning of strength.
Follow us on social media!  Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. × Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. Latest Posts  |
| 30 Days of PH: When PH Is In The Family - Pulmonary Hypertension News Posted: 19 Nov 2020 07:00 AM PST
Day 19 of 30 Days of PH This is Joanne's Story @Zoanna6464 My PH story is a family one. My mom's sister, Josephine, died at 23 in 1963. She was newly married, and her symptoms really came out once she became pregnant. She passed very quickly, with an enlarged pulmonary artery. Thirty-two years later, my brother John was 34 and started passing out whenever he exerted himself. He went on an odyssey to find out what was causing this, seeing multiple doctors, and having every test possible. An echo revealed an enlarged heart and pulmonary artery. The doctor suspected pulmonary hypertension. This jogged mom's memory, and we had Aunt Josie's hospital records pulled. Her diagnosis: primary pulmonary hypertension. John was referred to Columbia Presbyterian and placed under the care of two expert cardiologists that specialize in PH. Three years later, I started having the same symptoms and was diagnosed by my brother's doctors. We realize that there's a genetic factor at work in our family. Following our diagnoses, mom's other sister and her kids all get tested as do my brother's two daughters. Regular echos become a routine thing in our family. We participate in every genetic study that comes along, hoping to identify our family's mutation. Researchers have found many genetic mutations linked to PH but haven't yet found ours. We became very active in the PH community and formed the first local support group that still thrives today. We hold events to raise awareness and funds for research. In 2015, our worst fears were realized, and we lost my brother John. He fought like a lion for 20 years and suffered not only with PH but two other illnesses. His loss was crushing, but we know he'd want us to stay diligent in the fight to thrive and survive. I'm considered a 'long-term survivor'. My nieces are tested regularly and I encourage them to stay healthy. We don't know what triggers a mutation to activate, but we've been told to take excellent care of our bodies and spirits. I think that advice can be applied to our whole lives.
Follow us on social media! Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. × Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. Latest Posts  |
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