With PH, Every Day Brings Another Roll of the Dice

When I describe my pulmonary hypertension (PH) as stable, many think it means that I’m in remission. They don’t comprehend that, while my numbers may be stable, I still have PH. I continue to experience symptoms, require oxygen, and PHight daily.

Those of us with rare, chronic illnesses celebrate when we hear “stable” or “slight change.” This news is better than disease progression. However, some people don’t understand the struggles we still face. Education is critical in times like this.

While those with PH do experience days when we feel better and can do more, this can change without notice. Many factors can exacerbate PH symptoms, including stress, weather, air quality, and elevation, flipping the script when we might have plans or are experiencing a lull in disease activity.

Don’t get me wrong, symptoms such as palpitations, shortness of breath, fatigue, and pain are a part of my daily life — even on good days. But I experience more good days than horrible ones, where I’m struggling with exacerbations that often require hospitalizations. I have fewer PH crises now than in previous years.

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My current stability would be impossible without continuous education, research, and technology. My knowledgeable healthcare team works hard to learn how my body reacts to different treatments. Working closely with my doctors helps me PHight every day. If something isn’t working, I’m the first to speak up and advocate for myself.

PH doesn’t yet have a cure. But finding the best treatment plan for our bodies can offer some relief and help us maintain our “new normal.”

With PH, I feel different every day. My husband, Manny, would say I’m a bit fickle when deciding on an outfit or a meal. But that’s because I’m busy making more challenging decisions about my health.

Ironically, as I was in the middle of writing this column, the script flipped. I ended up spending four days at my local hospital because of an upper respiratory infection, which led to an exacerbation of my PH and kidney disease.

Manny had taken me to urgent care the night before, where doctors looked me over and recommended I be evaluated in an emergency room. Manny and I decided that if I wasn’t feeling better the following day, I would call my PH team and neurologist and go to the ER.

The next day, I talked with my PH nurse practitioner, who also suggested I go to the ER. I’m grateful I ended up going, as I was in worse shape than I thought. But thanks to excellent communication and my inpatient healthcare team, I was treated and discharged a few days later.

After returning home, Manny commented that, for me, each hospitalization is like rolling the dice — we never know what to expect. He added that he often thinks about the loving and supportive caregivers left behind in an instant, especially during COVID-19. He offered examples from our family and PHriends.

My heart broke, and tears started rolling down my cheeks. I don’t believe our families and caregivers will ever know the guilt that patients struggle with — whether it’s because we need extra care or know that it will be our time one day.

I wish others would realize there is no remission with a disease like PH, even though we all are PHighting for a cure. Despite the occasional stability we enjoy, there will always be times when the script flips, and we must roll the dice once again.

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.