Journeys in Healthcare from a Youth Perspective Part 4

My name is Tommy.  I am 20 years old.  I have a rare disease called Anti-NMDA Receptor Encephalitis that caused me to have epilepsy and a brain injury.  

I was diagnosed when I was 14.  My disease affects all parts of my life.  I have a hard time remembering things.   I don’t get to do things other 20-year old men do.  I don’t get to drive a car.  I don’t get to go to college.  I process information slowly.  It’s hard to find a job because I will need time off to take care of my medical needs.  I have to miss a lot of school for appointments, infusions, and being sick.   I go to Seattle Children’s Hospital once a month for an infusion. They give me chemo, steroids, and immunoglobulin through an IV.  Not all at the same time though. 

The immunoglobulin gives me healthy antibodies to replace the bad ones that are killed by the chemo. I only get chemo & steroids every 6 months. I cannot get my driver’s license, so my parents and my sister have to drive me.  I am learning to ride the bus, but it’s hard and it’s taking me awhile. I want to get a good job and have my own money, so I am in a transition program with my school district.   They are helping me learn how to do different jobs so I can see what I’m good at.  I love video games, and I really want to work at GameStop someday.   

My health is really confusing for me, so I rely on my mom to help me.  But I am good at talking to the nurses when I go for infusions.  I recently went to one and my mom had to work so my sister took me.  I was able to tell the nurses where I like my IV placed, that I like numbing cream and that I don’t use the J-tip unless it’s a last resort because it’s been more than a 2-poke day.  (That’s what we call my IV pokes.  If it takes 2 tries, then it’s a 2-poke day.) It took me a long time to be able to remember all that. I used to have to ask my mom what we usually did.  But I have been working hard at remembering. I even remembered that the J-tip gives me scar tissue and that’s why we don’t use it unless it’s really hurting to place my IV.     I am still learning a lot of these things. 

I think that if I could give someone advice it would be to use technology to help you remember things.  I use my apple watch and my iPhone to help me remember things.  My mom and I have talked about using my notes app to write down things I want to ask the doctor– or things I want people to know so that if I am having a hard day, I can show them.  I am not very good at it yet, but I am trying.