Being On the Other Side of Healthcare

June 12th, I received the worst phone call of my life. My mom was in the ICU having untreatable seizures. Initially, I was not concerned. The hospital was asking about her insurance information, so I assumed the worst was over. This was also not the first time she had experienced a seizure.

Mom has been diagnosed with a seizure disorder for the past seven years. She managed them very well and was seizure-free for nearly five years. The thought of her seizing again was the farthest thing from my mind. And if she did, I thought the seizure was over and she was likely waking up. Initially, the hospital asked for her insurance information (which I didn’t know). I thought since they wanted to healthcare info she was stable and on the mend from the exhaustion that grand mal seizures cause. It took me 30 minutes to be informed that my mom had been seizing for the past hour and was not responding to the medication.

The next 24 hours were a blur of phone calls, tears, and panic. My mom was in another state, my dad was on a trip with shotty cell service, and my brother and I were left trying to figure out what to do. Hours felt like days. Keith and I tried to be patient and wait for the hospital to call us with any information about my mom’s condition-- but in all honesty the hospital was on speed dial. That night was utter chaos. With each hospital personnel we spoke with the diagnoses changed, from seizures, to heart attack, to sepsis. I have never been more scared in my life.

This story has a happy ending. My mom survived. She proved to be a fighter we know her to be. Her neurologist diagnosed and treated her for viral encephalitis in the medial temporal lobe. Encephalitis is insanely rare. The Mayo Clinic reported fewer than 200,000 cases in the US each year--that’s about .06%. She spent five days in the ICU, and was then transferred to the general floor for observation for another three.

Being a student in healthcare has its advantages and disadvantages. Throughout our time in the hospital, I was able to follow mom’s tests and treatments that the doctors prescribed. I was able to identify her progress and learn how to read the machines hooked up to her. However, it also gives you a grave realization of how serious illness can be. Sometimes ignorance is bliss.

Being in healthcare can give you a huge advantage. You get to use your expertise to help someone overcome unfortunate circumstances. You are the expert who knows what’s going on, and hopefully, how to fix it. That is one of the reasons I love this field. However, realizing how little control we have over our bodies is humbling, and also terrifying. Being on the other side, as a patient’s family is a whole other ball game. It’s scary, and uncertain, and vulnerable. Knowing about the body makes you realize how little we know about the body.

So, from being on the receiving end, this is what I advise my friends who will be doctors, nurses, and therapists. I’ve learned a lot through this nightmare. It’s opened my eyes to see what hurts and what helps.

First, check in with patients and their caregivers. Nothing was more comforting than talking with my mom’s nurses and having them explain what was going on, thoroughly. Seeing the staff sit down with us and answer all our questions was so comforting and built a lot of trust with us and the hospital staff. I have nothing but good things to say about all of my mom’s doctors, nurses, and therapists. They were amazing, and let us come and go as we needed. There were many days my dad would get to the hospital at 5 AM for rounds, he was always welcomed.

Second, be honest and straightforward with treatment and prognoses. The nurses and doctors were very open with us about my mom’s progress. They did not shy away from telling us their concerns. Personally, it was reassuring to know they were being straight shooters with their information. They told us when mom was doing better, but also kept us in the loop of other possible concerns. It’s hard to explain the relationships built in this circumstance. But the hospital staff made us feel welcomed, supported, and a vital part of my mom’s recovery. The warmth and compassion I received from the hospital staff is indescribable. They felt like family. They were just as invested in my mom’s recovery as we were. I’ve never experienced so much love and support from complete strangers.

As future healthcare providers, we hold a responsibility to our clients, their families, and ourselves to provide the best care possible. No exceptions, no excuses. I’ve seen the power that a unified team can provide to a patient. It’s life changing, and life saving. This should be the standard we all aspire to reach and maintain throughout our careers. Maintaining humility, compassion, and the desire to help others should be the foundation. We owe it to ourselves, and we owe it to our clients.