November is Pulmonary Hypertension (PH) Awareness Month. In honor of PH Awareness Month, I will be sharing patient profiles about special members from the PH community. Please be sure to visit throughout the month of November to read more PH profiles.
Carolyn Marthur resides in Brooklin, Ontario, and has been living with PH for 21 years. In 1997, she started the first PH support group in Canada, where she met once a month with other patients and a social worker at Toronto General Hospital. She now runs a monthly “Quiz Night” in Brooklin that raises funds and awareness for PH.
Her PH symptoms began shortly after the birth of her second child. She was diagnosed with stage 4 pulmonary hypertension at 34, and was told she had only a week to live. Her daughter was 3, and her son was only 1 at the time of her diagnosis. After surviving the initial week following her PH diagnosis, her doctors gave her a month to live. She was able to leave the ICU and go back home.
After surviving the first month, she was given just another six months to live. Her prognosis continued to improve. She was soon told she had two years to live and then five. “Now being one of the longest survivors of PH is a great feeling,” Carolyn says.
Upon diagnosis, Carolyn was very unwell and her pulmonary pressures were at 104. Thankfully, Her condition has improved greatly and her pressures are now in the 60s. She was originally put on Norvasc (amlodipine besylate) to treat her PH until a heart and double-lung transplant was needed. “To this day, I am still at the same dosage of Norvasc,” Carolyn says. “To my understanding, doctors do not even suggest Norvasc to new patients, as there are so many other meds out there that have shown a quicker response to PH.”
Told she could never exercise again, she walks 5 kilometers a day with her dog, Sheldon. Carolyn also was told she never could fly again because of her condition. Since her PH diagnosis, she has visited more than 50 countries. She even climbed the Great Wall of China and climbed 175 steps to make it to the top of Diamond Head in Hawaii.
She hesitates to discuss what advice she would have given herself when she was first diagnosed with PH more than 20 years ago. “Since my case is truly different than any other I have ever met, there isn’t any advice that I would have given myself,” she says. “I think I did great emotionally, as what other chance did I have? I can truly say that I have not had a sad day with my PH since the original first month of being sent home to die.”
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.