Personally speaking, I would say being on a ventilator ranks as one of the worst experiences of my life. The thought of having to rely on one again has definitely deterred me from leaving my home.
To give you an idea of the process, patients are intubated before being placed on a ventilator. Patients may or may not be asleep during this process, which involves “having an endotracheal tube placed in the mouth or nose and threaded down into the airway. This tube has a small inflatable gasket which is inflated to hold the tube in place. The ventilator is attached to the tube and the ventilator provides “breaths” to the patient,” according to Verywell Health.
Although patients are typically sedated after being put on a ventilator to help keep them calm and comfortable, it doesn’t always work because they may feel the tube and the air being pushed into their lungs.
I remember everything about the process even though the anesthesiologist tried to pretend I wouldn’t remember it. Lauren Agoratus, from the Statewide Parents Advocacy Network in New Jersey, told me that being on a ventilator is something her daughter Stephanie will never forget either.
When Stephanie had complications from a kidney transplant, she was put on a ventilator. “They said she would be in a twilight state and unaware. Not true,” Agoratus says, recalling that Stephanie cried and used American Sign Language to express her extreme thirst.
“I asked Stephanie if she remembered it and how she felt, which I knew she did because every time we go to the hospital she says ‘no breathing tube,’” Agoratus said. “She said ‘it was terrifying that she needed it.’”
Jessica Rogers, who is a quadriplegic and has been on a ventilator several times, agrees. “It was very uncomfortable, and it’s scary because it breathes for you,” Rogers says. “Sometimes you feel like you’re ready to take another breath, but [the machine] doesn’t do it yet. You know what I mean?”
Yes, I know exactly what she means. At times, it felt like I couldn’t breathe at all. I remember trying to write that on a piece of paper so my husband could call for help when I experienced it. In fact, I had to write down everything I wanted to say because I couldn’t talk. I circled words for emphasis.
There is no way to call for help and you have to hope you can reach your call button and that somebody answers it. Obviously, you can’t eat or get up. And if you are lucky to get off the ventilator, that process is awful too.
Agoratus and her daughter agree. “When they extubated her, she went into respiratory distress, coded, and they had to reintubate her [while she was] awake. I heard the code blue and just knew it was her and sure enough all the doctors piled into her room. Her regular doctors had just come upstairs and asked me how she was. I lost it [for the] first time in 15 hospitalizations — even though she had been resuscitated on several occasions. I replied, ‘Her new kidney is failing and she just coded.’ One doctor stayed with me and the other ran to her room. They had to keep her on the ventilator two more days and gradually weaned her off.”
When Agoratus asked Stephanie about when they put the tube back in, she said, “It was scary. I wanted my mom.”
Stephanie also said the tube hurt because it felt like it was puncturing her. “She was fighting them because she was awake, and they had to force it in, causing throat and mouth abrasions.”
