Herpes Simplex Encephalitis Lived Experience – Aurelio’s story

Hello, my name is AnnaMaria.

I am speaking on behalf of my father, Aurelio. My father does not remember much of what happened to him except vivid dreams and hallucinations, so I’m here to tell his story and spread awareness on his behalf.

My father was diagnosed with HSV-1 Encephalitis in October 2020. My father is what you would call a stand-up guy, the life of the party, a heart of gold-type person. He fills every room he walks into with love, joy, and happiness so naturally this incident heavily affected all our lives: friends, family, and everyone around us.

I’m an only child and both my parents come from small towns in Italy. They were both raised in strong families and with even stronger family mentalities and that is what I’m most grateful for. This nightmare that my mom and I went through showed us what can happen in life and how quickly things can change so drastically.

It all started on October 8, 2020. My father was hanging out at my Godfather’s garage just talking and suddenly he fainted and hit his head hard on the pavement. My Godfather, in a panic, called my mom to get there as soon as she could because my dad would not let him call an ambulance (Italians are a bit stubborn).

My Mother took him to our primary doctor (who is also my dad’s cousin) and he ran an EKG telling us that my father was having a heart attack. Little did we know this incident was going to turn out to be something entirely different. That same day, my father was admitted to hospital, and after doing a cardiac catheterization, he was discharged on October 13th as he was seemingly “fine” to the doctors.

The night of the 13th, and the following two days, my father began running a high fever and started saying strange things while showing signs of confusion/personality changes. I immediately contacted the cardiologist who had worked with him, but he seemed unfazed and later would not reply to my calls. On October 15th, we brought him back to the Emergency Room as he was complaining of burning stomach pains and was running a fever of 102.2.

He was discharged that evening after various tests, having been told nothing was wrong with him as his tests came back seemingly clear. That night, I knew deep down something was not right. I studied all his results back at home.  On Friday, October 16th, my father slept most of the morning until late afternoon. He woke up and actually stood up for the first time on his own since the first hospitalisation. He acted more like himself that afternoon, but out of nowhere later that night, standing in the centre of the kitchen he suddenly complained of a horrible painful headache.

He went to sit down and there, before my eyes, was the most traumatic thing I’ve ever witnessed in my life. My father slid back into the couch, turned his neck to his left, and blankly stared out into the distance while repeating moments he had experienced over and over again.

We called out to him, ‘Pop can you see me’, my mother holding his face: ‘Aure look at me, look at me!’ He responded: ‘Honey, I can see you I can see you’, but his neck was so stiff that he was stuck in this position.

I called the ambulance immediately worried my father was having a stroke or a possible seizure. His neck was stiff, his body turning inwards and within just a few minutes he was no longer able to speak much. To our knowledge, this was the beginning of his battle with HSV-1 Encephalitis. That night my mom went off with my father in the ambulance and I panicked and cried the most I ever have in my life.

I called my cousin who is a nurse and she arrived in less than five minutes. I ran to her and clutched onto her for dear life, sobbing and hyperventilating. I was facing something I’d never had to see before. Meanwhile, my mom was in the ambulance watching my father sway his arms back and forth in constant motion. They got to the hospital, and he was admitted right away, no one knew what was wrong with him. They were convinced it was a stroke, but as he threw his arms in the air, they started to realize it was something more. 

That night into the morning my father suffered constant seizures with no relief in sight. Doctors rallied together to come up with a plan, but nothing was working to get him to finally calm down. They officially called in a doctor that was known as Doctor O and he was head of neurology. He waltzed into the room, greeting my mother and he provided a cocktail of drugs to physically calm down my father from the seizures. Though physically there was an improvement, my father’s brain waves continued to be affected by seizures. Doctors were worried he was suffering from status epilepticus and would eventually have serious brain damage. 

This was a very scary moment for us, not only is my mother in the hospital alone because I was not allowed in due to COVID, we’re now being told she must sign off on his life so they could place him into a drug-induced coma. My mother followed the nurses down the stairs into the lower level of the hospital and, at that moment, my cousin clocked out of work and ran to her. God has a funny way of reminding us of who’s with us in our toughest moments. 

That night, just before my mother’s birthday they shut off my father’s brain temporarily and my mother was heartbroken. She had lost her mother on her birthday so she was extremely worried my father would not be recovering from this, and that she will lose him just as she lost her mother. The next morning, they continued to use certain drugs to manipulate my father’s brain waves into settling down. Nothing seemed to be working for days, and we grew more and more worried. They then suggested placing him on a ventilator and giving him a tracheostomy. They intubated him and this was successful. We couldn’t have been more grateful. After a few days, they monitored his lungs, and luckily everything was clear though my dad was a serious smoker, three packs a day of Marlboro Reds.

Doctor O watched my father daily, checking in on his EEG, and seeing the small seizures still not letting up, but this time only in his brain with no physical movement. Eventually, they tailored the medications perfectly and my father finally stopped seizing all together. This was a day-to-day scare, constantly not knowing where we stood in life and death. It took a great toll on me and my mother spending many days and nights alone.  Not knowing how to hold a simple conversation because we did not know where we stood. My father finally became more alert, blowing my mom kisses, and reaching for her holding her hands. My mom would ask him to Facetime me, but he constantly said no or didn’t remember who I was. 

I spent a lot of my time doing research and came across Encephalitis International, watching all the videos of people who had suffered and them not remembering a thing, not their lives, not their family members. I got so nervous that my father would never remember me. I spent every day on the phone with a great friend of ours, a doctor, who helped us along this crazy way. He guided us, gave me a crash course of what to expect and what to hope for, and ultimately remained our security throughout the whole time. I became so well versed in the medical world, and was proud I learned so much and we’re still so grateful to have had him during that whole time, it was such a blessing. I knew deep down in my heart all our prayers would work, and that God was truly watching over us. 

During this time, Thanksgiving came along, and we seemed like we were headed in the right direction. My father was able to speak being ventilated and no longer seizing, and things were looking up. My mother, myself, and my fiancé all sat around the dinner table getting ready to celebrate Thanksgiving, and suddenly a call from the hospital on this house phone. I looked at my mom in such despair, I quickly picked up the phone and on the other end I heard: ‘Hey Pop, it’s Me!’ I said ‘Pop! Pop?!’, ‘Let me talk to Mommy, I wanna come home’, he said. I was in disbelief, I hadn’t seen or heard from my father in a month-and-a-half, and now he suddenly calls the house phone just like this? It was a Thanksgiving Miracle! I told everyone I could, that he was finally back. That night we all slept more peacefully knowing that life was made of all these beautiful miracles and my Pop was on his way to finally coming home.

Forty-three days had passed and time seemingly stood still but my father was finally officially discharged from the hospital. We fought tooth and nail to get him off the ventilator because they wanted to move into a ventilator assisted facility. But I argued to get him to breathe on his own because we knew he was strong enough to do so. The next day they officially took him off the ventilator and got him ready to be discharged. After what felt like an eternity without my Pop, we could finally see him and send him off to physical therapy where he was for weeks. 

On December 12th, he graduated from his therapy and was finally able to come home. We spent days with therapists, playing board games, and figuring out puzzles together. I knew that every moment spent with him meant more than anything in the whole world. We wanted him BACK. He slowly began to talk again, could talk well but had lost a lot of his hand strength. He came home with these thoughts and crazy dreams that he thought were a reality. He was confused about day time or night time and would ask me all day everyday what time it was and where he was. It took at least seven months to see a serious improvement and then he wanted to drive right away, of course. To this day my father looks back at that time not knowing what really happened except for strange dreams and confusion with reality, while me and my mom try not to look back and relive a moment we thought would haunt us forever. After sticking together, loving extra hard, and working hard to get him back I can honestly say my Pop is back to himself. I wouldn’t say 100% he still has some moments where he is forgetful, very impulsive, and sometimes moody but I wouldn’t trade it for anything in the world. What we went through was a very difficult time and if it wasn’t for our faith and support of those around us we probably wouldn’t be where we are today.

I hope his story lives on and shines a brighter light on those who have suffered from Encephalitis, know someone who suffered, or even know someone who has passed. It was a very testing time and it gave us more to look at in life and I couldn’t be more grateful for that. My father is my best friend, and my mother’s love of her life. He is our absolute WORLD, and we couldn’t be more thankful to those who supported us, and to God for giving him another chance.