Accepting that life with PAH is a marathon, not a sprint
How I came to terms with my husband's pulmonary hypertension diagnosis
Pulmonary arterial hypertension (PAH) isn’t a one-size-fits-all disease. Each patient’s diagnostic journey and treatment protocol look different, and the condition’s complexity and severity will vary for everyone.
For my husband, Tim, the PAH journey has been long, resulting in an array of medical issues, including gout, thyroid storm, atrial fibrillation, and vertigo.
High pulmonary arterial pressure was destroying Tim’s lungs, blood vessels, and heart before he was even aware he had a situation. This irreversible progression was occurring as Tim attended college, got married, and started a family. Though it caused vague symptoms, he explained them away.
By the time Tim was diagnosed in 2002, he had Class 4 PAH, the most severe form of the disease. We had no idea what repercussions he’d endure from years of vascular restructuring.
Six months after Tim’s diagnosis, he began what I considered the gold standard treatment for PAH: intravenous Flolan (epoprostenol GM). This therapy required him to stay home and restrict his activity while titrating the medication to a therapeutic level. To adjust his dose from home, he needed to have an adult with him at all times in case an issue arose.
After several weeks of no incidents with daily incremental dosage increases, I returned to my job as a nurse working night shifts. Tim’s best friend typically spent the night, helping with our children and assisting Tim.
Returning to work gave me a reprieve from staying home with Tim, allowing me to feel that we’d settled into our new normal. I told myself that we’d gotten past the worst of Tim’s medical issues and that our lives would soon stabilize.
That was one of many times I was wrong about the nature of PAH.
Coming to terms with our new, unpredictable life
One night, two weeks after returning to work, the nursing supervisor appeared in the unit, looking for me two hours into a 12-hour shift. As I wrestled with a familiar sense of dread, I braced myself for what could only be bad news. She kindly let me know that she’d received a call that Tim was having trouble managing his breathing and heart rate. Our friend was on his way to the hospital with Tim.
That was the first time since Tim’s diagnosis that I allowed myself to become unglued. The emotions I’d been holding in for months all came spilling out. I remember running to the employee bathroom, falling to the floor, and allowing myself to feel the feelings I’d been bottling up.
I realized I was crying because this disease was my new life.
Amid my sniffling about the unfairness of it all, I realized that no matter how closely we follow a treatment regimen, the disease dictates what’ll happen. The chaos of living with PAH is not something to conquer, but something to expect.
The night I had my bathroom breakdown, I chose to get up off the bathroom floor, continue to support my husband through each PAH-related complication, and promptly address and report new symptoms. I don’t take for granted each day when we enjoy relative normalcy. I’m grateful our marathon was not a sprint.
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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Comments
Pauline Barrett
I was impressed and sympathetic to your experience of living with PAH. I too have this and I try hard to exercise twice a week and do as many 6 minutes walk as I can.
You are not alone however far across the world you are, and I greatly admire your strength and the way of living an hope each day you can both live life to full. I was diagnosed 6 years ago as a result of other medical issues and I thank God every morning I wake up.
Jim Dildine
Thanks for sharing yours and Tim's PAH journey. I'm fairly newly diagnosed and retired, so my journey will not be the same as Tim's. Nevertheless, your story resonates, as I'm sure it does with others dealing with this and other chronic conditions. Best wishes to you both!
Paul
As a 10 year diagnosed patient, everyday is a blessing and a challenge. Not only to the patient (me), but to the entire family. Thank you for providing the knd, loving care every patient deserves, not just PH patients. Thank you for your honestly and kindness.