How hospital staff, other patients supported me after my diagnosis

Recently, I participated in a paroxysmal nocturnal hemoglobinuria (PNH) panel discussion where patients shared stories about living with the blood disorder. Many mentioned that support from hospital staff helped them build a community they didn’t know they needed.

After being diagnosed with aplastic anemia and PNH, I received support from many different people who saw me regularly. I have visited different hospitals, but the level of genuine care has remained constant. For me, this support network has been composed of doctors, nurses, social workers, phlebotomists, and even other patients and their families.

The first hospital where I received care was the local children’s hospital. As a 19-year-old on medical leave from college, I was one of the oldest patients there. I’d been searching for answers for months and finally found a doctor there who understood what was going on and accurately diagnosed me.

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At that point, I started receiving blood and platelet transfusions, requiring me to spend three or four days a week in the hospital.

I quickly got to know the two nurses who administered the transfusions. I’d been stuck with needles many times by then, but these nurses always treated me with care and were amazing at their jobs. I enjoyed watching them roll around on chairs as they helped one child after another, remembering each patient’s name and diagnosis. However, it was never a good sign when I saw them two days in a row, as that meant my platelet or red blood cell counts were declining too quickly after a transfusion.

In addition to these great nurses, a social worker regularly stopped by to check on me. She had such a genuine spirit that it was easy to request resources and open up to her about my needing financial aid.

All of the hospital staff I interacted with rooted for me throughout my treatment and wanted nothing but the best for me. As a college student, I’d been concerned about the next big exam, sorority event, or football game, but taking medical leave and spending so much time in the hospital shifted my focus. My eyes were opened to the beautiful community of medical professionals, patients, and families at each hospital.

As my family and I sat in the waiting room day after day, the faces of those on similar treatment schedules began to look familiar. Through conversations and shared stories, I got to know the beautiful souls who were learning about the meaning of life through their health journey. The question of why they were at the hospital remained unspoken, but everyone was quick to answer it anyway.

Over time, we came to lean on each other for support and were able to provide a listening ear. We understood the weight of being a patient or a loved one, which made it easier to be vulnerable.

I will always remember the hospital staff and other individuals who have supported me on my health journey.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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