30 Days of PH: A Social Worker’s Perspective on Guarding Hearts

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by BNS Staff |

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30 Days of PH | Pulmonary Hypertension News | Reader submission | 30 Days of PH graphic

Photo courtesy of Darci Stout Albrecht

Day 24 of 30

This is Darci Stout Albrecht’s (@darci.albrecht) story:

The most intense and rewarding work I have done as a licensed clinical social worker has been with the pediatric pulmonary hypertension (PH) population. I have been a clinical social worker in the hospital setting since 2009, and I am blessed to work in California at the Lucile Packard Children’s Hospital, at Stanford, and at the Sutter Medical Center, in Sacramento.

One of the teen PH patients I worked with made me a red ceramic heart. This treasured heart has holes in it, cracks on its surface, and designs etched across the outside. The young lady told me, before her heart and lung transplant, “I have an imperfect heart, but I am the person I am because of my daily fight to live.”

The holes represent what we are given and must accept; the cracks demonstrate our ability to heal and move forward with emotional and medical support; the etched-on designs represent the tenacity of the fight against PH and the ability to live with a chronic disease.

This ceramic heart would shatter without being held with caution. In the same way, the fragility of PH patients is held together by their loving and dedicated caregivers, who give endlessly to support their loved one’s fight.

All PH patients are held up by their medical doctors, evolving science, and a multidisciplinary team — but most importantly, by their caregiver(s).

Nearly 14 years later, this ceramic heart still sits on my desk and is a daily reminder to me of the gift I have been given in working with PH patients. I respect my position as a social worker on the multidisciplinary team caring for complex patients and feel honored to walk alongside these young fighters and their families.

I hope that all patients and families facing chronic illness make good use of their hospital’s social worker to help encourage and guide them on their personal journeys. A clinical social worker can assist with emotional counseling, resource coordination, advocacy, and disease education — and the guarding of patients’ hearts.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.