Some lifesaving drugs, such as aminoglycoside antibiotics, can cause permanent damage to a patient’s inner ears, leaving them with lifelong hearing loss.

 

Jennifer Gibson, author of a trilogy of fictional books inspired by her own hearing loss, shared her experience with us.  Jennifer was hospitalized for a kidney infection, where she then suffered from pneumonia and a collapsed lung.  Thankfully Jennifer recovered after emergency surgery and strong antibiotic treatments, but the damage to her hearing was permanent:

It was after this that we realized something wasn’t right, that I was struggling to hear what everyone was saying.  It completely changed my life.  It ripped my world apart.  It was difficult enough being hard of hearing, to become deaf was a sudden shock to all of us.  I’m still struggling with it to this day.

Jennifer has been kind enough to share an in-depth look at the period in which she lost her hearing, which you can read below. You can also read more of Jennifer’s writing, inspired by her own experience with hearing loss, in her bestselling trilogy series – “Sway”, “Compass” and “Destiny.”

If you have experienced hearing loss from treatment by ototoxic drugs, as Jennifer has, or know someone who has, please consider joining our BE A HE[A]RO campaign this #GivingTuesday.  Through the BE A HE[A]Ro campaign we aim to support research already underway in our labs to make lifesaving drugs, such as aminoglycoside antibiotics, safer for the ear. Our goal is to make possible this ototoxicity research is $35,000, $5,000 of which will be matched 1:1 by a generous donor.  Your participation is key to making this important research possible. Please consider making a donation this #GivingTuesday.  If you are among the first to give, the impact of your gift will be doubled, helping make safer aminoglycoside antibiotics a reality.

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Wish

by

Jennifer Gibson

Ice cold fear washed over me as I stared in shock at my doctor who was an ear, nose and throat specialist, ENT for short. In his hands, he held a sheet of paper featuring a graph of lines resembling mountains. One line in particular suddenly dropped and veered straight down to the bottom. It was a bad sign.

I gripped Momʼs hand once I realized what he was saying, “Youʼre deaf.” It was as if a cold, heavy stone dropped into my stomach. My heart sank into a pit of despair.

Gulping audibly from a constricted throat, I asked, “Can you fix it?”

He shook his head. “Iʼm sorry to say this, no. Itʼs not possible, the damage is permanent.”

I felt weak, my arms and legs felt wobbly like jelly. I wanted to fall to my knees and scream, “Why? Why me? What did I do to deserve this?”

As I sat shaking in the chair in his stark white office, Mom asked him, “What caused this sudden change in her hearing?”

He leaned forward on his desk, laced his fingers together and gently placed them on top of my chart. “Itʼs most likely due to the antibiotics from the surgery she had recently.”

I had a sudden flashback to that day to when my parents rushed me to the hospital as writhed in agony. Upon arrival to the ER, I was immediately given an IV of saline. A sheen of sweat covered my body as I desperately tried not to scream from the convulsions.

The doctor stood beside my bed and asked, “How long have you been in pain?”

“Almost two days” I gasped. “It just got much worse today.”

His eyes flicked over to my parents then back at me. “Youʼve had kidney stones before, is that correct?”

I nodded, “Twice.”

He perused my chart for a long moment, then looked at me. “It has usually resolved itself quickly, within a day, is that right?”

“Yes. Never this long though.” I said as I gritted my teeth against the pain.

“Iʼm going to order a series of blood tests to find out if there is anything else going on. In the meantime, I will have the nurse give you something to help with the pain, okay?” I nodded.

The nurse walked in carrying a clear bag of fluids and hung it on the IV pole. Within minutes, I began to feel the effects of the drug. My head felt like it was floating. It was a strange sensation. I could still feel the pain but my mind didnʼt seem to care. A technician came in and filled several tubes worth of blood. I began to nod off, feeling intensely weary. I didnʼt care what was going on anymore, I was in my happy place right now.

I had no idea how much time had passed when the doctor finally came back. “Your blood work has revealed an infection which is why you are having so much trouble this time.”

Mom looked at Dad in concern, then back at the doctor. “Oh my. What can we do?”

“We are going to have emergency surgery. The OR is being prepped right now.” he said.

Momʼs hand flew to her mouth in shock.

He looked at me, “Youʼll be taken to the OR shortly.”

Dad reached out to him and shook his hand, “Thank you doctor.”

I drifted asleep, when I woke up, the lights on the ceiling were zipping past me. I was being wheeled down the hall. Mom and Dad were walking briskly beside me, glancing worriedly at me. Once we reached the doors to the OR, we came to a halt. Mom held onto my hand, “Weʼll be waiting out here for you. Good luck.” She leaned in and gave me a kiss on the forehead.

I suddenly felt very scared. Fear gripped me tightly, like a heavy blanket. I didnʼt want to go in. Blinking back tears, I said, “I love you.”

Dad put on a brave face and gave me a brief smile, “Iʼll see you soon, okay?”

I nodded, too afraid to speak. I waved at them as the doors opened and I was being guided down a long white hallway. We emerged into a brightly lit spacious room. Several nurses in blue scrubs moved briskly around me, one them approached me and said, “Donʼt worry about a thing sweetie, these guys are pros.”

A tall man in scrubs loomed over me from behind holding a transparent mask. His eyes crinkled at the corners as he smiled, “I want you to breathe deeply as I place this over your nose and mouth.”

I nodded and took several shaky breaths. After a few moments, my eyes began to droop and I drifted off to sleep. I dreamed that I was watching the nurses and doctors operate on me, standing in a circle around me. I could see their faces peering at me from behind their surgical masks. The only thing strange about this was that everything was in a vibrant shade of purple, as if I was wearing violet colored glasses. “Odd.” I wondered, “Am I dead?”

Next thing I knew, I was blinking my eyes open. The room around me was a watery blur. I lifted my hand and waved it in front of me, wriggling my fingers. “I was awake!” I thought. “Whew!”

Someone in scrubs walked over to me and stood on my left. I groggily turned my head to see who it was. It was the anesthesiologist. He held up a clear tube filled with pieces of what looked like shattered pebbles. “Hello!” he said.

“Where am I?” I asked him.

“Youʼre in the recovery room.” He replied. “This is whatʼs left of your kidney stone.”

“Oh wow.”

“How are you feeling?” he asked.

I smiled, “The pain is gone!”

He chuckled. “Thatʼs good. Youʼll be taken to your room soon.”

“Room? What room?”

“Youʼll be staying overnight as a precaution.” he replied.

“Oh. Okay. Thank you.”

He nodded, gave me a quick wave then walked over to a nearby desk where a nurse was flipping through a chart.

I was wheeled out of the recovery room and into the waiting room. My parents promptly stood up and clasped my hands.

Mom beamed, “You look so much better!”

“I do?”

Dad nodded, “Your face was a white as a ghost before.”

“I feel great now, no more pain. Just really groggy.”

I was taken to my room, still attached to the IV. I asked the nurse what it was and she said it was antibiotics. “We need to make sure there are no infections in your body, especially while you are recovering.”

I looked at the clear fluid dripping into the tube that snaked into my arm.

Once I was released from the hospital, the days and weeks afterwards was a hazy blur. I was still weak and tired, not feeling quite right. Shortly after that, I began to realize something was wrong, very wrong. Mom noticed it too.

“Are you sure youʼre okay? You donʼt seem yourself and youʼre missing a lot of what Iʼm saying.” she asked.

I agreed, “I canʼt hear the TV. Everything sounds funny out of my right ear. Itʼs muffled and dull, as if itʼs too far away. Iʼm really straining to hear what people are saying.”

“Well, maybe itʼs time to have your hearing checked.” she said

“Okay.”

“Don’t worry, you may just have some wax in your ears.”

“I hope so.” I replied feeling apprehensive.

Unfortunately that wasnʼt the case. When I showed up for the hearing test, I suddenly realized that I was missing a lot of speech. The tones that I used to hear before, were gone. I could barely hear the words that my audiologist said and they seemed jumbled up. The bass now rumbled in my ear like thunder, a faint sensation rather than actual sounds. She immediately told me to see my ENT which scared me.

When I got home, I picked up my cat and discovered that I could no longer hear her purrs. I could only feel them against my cheek when I held her in my arms. It was at that moment that everything changed. My world was suddenly turned upside down. It was chaos as I tried to keep up with everyone. They spoke too quickly and whenever they turned their heads away from me, I had no idea what they were saying. It was as if they were whispering to me.

I felt invisible, like a ghost. Living in a social world where everyone takes speaking and hearing for granted, I could only watch what was happening around me, unable to interact. The life that I had was gone. I felt lost and alone, like a helpless child. Every night, I look up at the stars and send a wish to them. Then every morning when I wake up, I hold my cat in my arms, hoping to hear her purrs once again.

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 This #GivingTuesday, BE A HE[A]RO. Your donations could help protect future patients from lifelong hearing loss.