Meeting each other on this ‘lung road’ to improved health
A new columnist shares her family's pulmonary arterial hypertension story
What a privilege it is to share with you the thoughts, experiences, and feelings from my journey of being a caregiver, wife, and friend to someone living with pulmonary arterial hypertension (PAH).
I’m Karen Schultz, and I’ve been a registered nurse since I was 20 years old. I met and married my husband, Tim, when I was 21 and he was 23. We had three children, bought a small home, and were humming along. Then, subtle symptoms Tim had been experiencing since college began to encroach into our daily lives.
The symptoms of pulmonary hypertension, such as difficulty breathing or dizziness with activity, can be explained by other causes such as weight gain or lack of exercise. In Tim’s case, he had been experiencing difficulties with exercise and dizziness when climbing stairs or doing other activities, such as bending down to give our 1-year-old a bath. He passed out several times while I was working at night and was unaware of how he had decompensated. Something was wrong, and hiding its seriousness was no longer an option.
A diagnosis and uncertainty
Tim’s diagnosis came in November 2001, after a cough and acute breathing difficulty sent him to a primary care physician. A simple chest X-ray showed an enlarged heart. This discovery led to a referral to a cardiologist who saw evidence on an echocardiogram that his symptoms were caused by high pulmonary pressure. The heart becomes enlarged from pumping more forcefully against the increased lung pressure.
Before a pulmonologist officially diagnosed the lung issue, Tim ended up in the hospital with pneumonia. Luckily, he was seen by a pulmonologist in the hospital who was familiar with PAH and had attended medical school with one of the few colleagues who treated patients with stage 4 pulmonary hypertension with IV medications. The physician at Duke agreed with the urgency of treatment and agreed to take Tim on as a patient.
While everyone’s pulmonary hypertension diagnosis story is unique, the shock and uncertainty facing us were especially daunting in 2001. Not much was available for PAH in the form of treatment, and doctors shared that the likelihood of him making it past five years was small.
Throughout the years, looking to the future has always been scary and seemed too much to hope for. I remember lying in my bathtub at 26 years old, thinking about my three young children and trying to decide who I would ask to speak at Tim’s funeral and what I would say.
All the future milestones of a young couple would flash in my thoughts, such as celebrating graduations, weddings, and landmark birthdays. I saw myself alone, telling my children about their father instead of our family experiencing life together. At the time of his diagnosis, given the severity of his disease, our new reality became preserving his life and avoiding looking to the future. Our best hope of a future was five years with Tim.
The symptoms of stage 4 pulmonary hypertension are ever-present, but the advances in treatment are nothing short of amazing. There’s more awareness and general knowledge related to PH than ever before. However, we find ourselves frequently explaining to providers exactly what PAH is, and the treatments my husband takes are foreign to most people he encounters.
My story will strike some as familiar. Still, each person’s journey is different, as are the path they will take and the medications that will help.
I hope to provide encouragement and am grateful to share my journey with others in the community. I want people to learn about how to live — not just survive — with PAH on this “lung road” to improvement.
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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