How my family and I navigate the storm of hospitalizations

Battling pulmonary hypertension (PH) is like navigating a storm that never seems to end, casting unparalleled ripples through our family life. Throw a hospitalization into the mix, and stress and worry suddenly spike to the stratosphere.

As the one in the eye of this PH storm, I often feel a profound loss of control. I’m anxious about what lies ahead in these all-too-familiar, sterile rooms.

Then there’s the shadow of financial worry, which grows darker every day that my husband, Manny, has to take off work. He’s always by my side, offering support. But I know his mind is a battlefield of its own, torn between concern for me and the realities waiting outside our hospital bubble.

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My family is shaken, too

Manny’s concerns prove that hospitalizations don’t just shake me alone; they also affect him and my daughter. Their voices become tense and their eyes shrouded in worry, mirroring the stress that has become our unwelcome companion.

It’s a bitter pill to swallow. I realize that with each trip to the hospital, managing my emotions becomes a steeper climb. My most recent hospitalization, several weeks ago, was particularly challenging. Beyond my physical woes, my mental health took a hit, too. My anxiety skyrocketed, and my fears of the unknown scared the hell out of me.

As I lay in the hospital bed, hooked up to machines and IVs, I couldn’t help but feel guilty for burdening my family with my illness. My struggle pulls my loved ones down with me. The thought of my daughter and Manny seeing me at my weakest creates a sorrow that haunts me.

Manny has always been my rock. He holds me when I cry, listens when I need to vent, and never fails to find a way to make me laugh, even on my worst days. But seeing him worry over every little change in my condition breaks my heart.

How could I need hospitalization when we have so many daily plans and joys? Unfortunately, you all know too well that this care is sometimes required. As patients, we give in once we realize that nothing we’re doing at home is helping us over yet another bump in the PH road.

Nights are the scariest

Sometimes when I’m alone in the hospital, mostly at night, I’m awake from uncontrolled pain and delirium since I can’t recall the last time I slept for more than a few hours. My mind wanders during these lonely hours, and I experience some pretty scary emotions. It takes me back to traumatic hospitalizations. I try to stop myself from going there since I know it will only worsen my anxiety and possibly depression.

Despite my wishes to keep these tsunamis of emotion at bay, they often crash over me at the worst times, leaving me and my family to navigate the aftermath. Each hospitalization feels like a step back from normalcy, casting a shadow of worry and frustration. Yet in moments of resilience, I find strength in solitude, a temporary refuge from the storm.

To anyone enduring this with me: I see the pain this journey has wrought on a path that none of us chose. But we are PHighting this together. It’s OK to feel vulnerable and to reach out for support; it’s a kind of strength.

Let’s cling to hope and move toward healing for ourselves and our families. Their patience and love keep us going. We can help by being wholeheartedly committed to finding better coping methods. Let’s navigate this storm together, anchored by love and a shared resolve for brighter days ahead.

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.