A Patient's Perspective

I Can't Be Casual About Wearing a Mask

Many of us feel nervous about being in public spaces these days, but Alan Hieber has more cause for anxiety than most. Hieber, age 26, has Duchenne Muscular Dystrophy, which puts him at high risk for serious complications if he were to contract the COVID-19 virus.

His anxiety escalated when he visited Cincinnati Children’s recently for testing of his heart and lung function.

“I’ve been coming to the hospital for over 15 years now,” he explained, “and my experience here has been good. Over the years though, the testing has gotten harder for me—I used to be able to get tested and visit with my doctors all in one day—but I get fatigued more easily now, so we split it into two days.”

Hieber expected that any stress he felt during his visit would be related to the testing itself. But when he went for his first test, he noticed the mask of the staff member who tended to him was below the nose. He did not feel comfortable speaking up about it.

As Hieber and his parents went from one department to another, including a break for lunch in the cafeteria, they

noticed several hospital visitors and employees who were wearing their masks improperly or who had removed them entirely.

Hieber’s father questioned staff about this. “One person said she hadn’t noticed anyone ignoring safety mandates, while others agreed that all COVID protocols should be followed,” said Hieber. “But I felt unsafe, and that feeling lingered for two weeks afterward.”

As he later posted on his Facebook page:

“It’s simply hurtful and makes me question how much I’m really worth in the eyes of others. I’m personally grateful for all of my outstanding care at Children’s, but I can’t help feeling disappointed by what transpired today.”

Masks On for Everyone’s Safety

Cincinnati Children’s requires universal masking, which means that any time you are on medical center property, you must wear a mask. This includes when you are walking to or from your car or riding a shuttle. (If you are able to socially distance, such as when you are in your office alone with the door closed, you may remove your mask.) As with all PPE, your mask must be worn appropriately, i.e., covering your nose and mouth. Here are some simple tips for wearing your mask:

  • Wash your hands before donning your mask.
  • If you are in a patient-facing role, switch out your mask at a mask-dispensing station every day.
  • If you’re in a non-patient-facing role, you can reuse your face mask for up to seven days.
  • Put on your mask, holding it by the ear loops.
  • Your mask should fit snugly against the side of your face
  • Make sure your nose, mouth and chin are covered.
  • The pleats on your mask should open downward.
  • After you’ve put your mask on, avoid touching it again until it’s time to take it off.
  • Remove your mask by taking hold of the ear loops and holding it away from your face.
  • At the end of each work shift, place your face mask in the paper bag upon exiting the building and leaving Cincinnati Children's premises. Store it in a clean dry space until its next use.
  • Wash your hands again.

No Stranger to Struggle

Hieber has courageously faced adversity all his life. He was diagnosed at birth with Duchenne, but he first remembers it affecting him at age 7 or 8, when he experienced difficulty walking and tired easily. At age 10, he lost the ability to walk completely and began to use a power chair. Still, he pursued his education and graduated with a bachelor’s degree in Mass Communication from Wright State University. He is a sportswriter for Wright State’s Athletic Department and has done freelance work for the Dayton Daily News. He also loves participating in 5K races in his power chair.

“Over the years, it’s gotten harder to eat, and I need more assistance to transfer from one place to another,” he explained. “Duchenne is a progressive disease, and with steroid treatment, the best life expectancy is typically the mid-30s. I’m 26 now, so it’s kind of scary to think about that.”

Hieber has worked hard to stay as healthy as possible. Even catching a cold can be a serious threat. “I have different devices to help with breathing,” he said. “I use a cough assist to help me clear my lungs. Fortunately, I haven’t been hospitalized with pneumonia.”

Hieber is scheduled to come back for a visit with his doctors in the Neuromuscular Clinic this month. He’s a little apprehensive, based on his most recent experience.

“I want everyone to know how important it is to wear a mask when you’re going to be around others and to wear it properly,” he said. “I want people to think about how not wearing a mask could impact those of us who are at greater risk of catching COVID-19 and dying from it. I have breathing problems, but I wore a mask for hours when I was at the hospital. It’s such a small thing to ask, but it could make a world of difference for someone like me.”

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