Four Hospitals, One Year, and Everything Nobody Tells You About Being a Patient

Somebody told me that my experiences from the hospital may be helpful, so I wanted to share some things that I have learned. I stayed at four different hospitals last year for several months and learned the following things:

Support System

It is important to have visitors. You want to have people come and visit you, whether it is family, friends, co-workers, neighbors, etc. It is not only important for morale, but they also notice stuff, even things that you are not aware of.

Examples:

I can’t go to the bathroom by myself, so I need diaper changes. At one of the hospitals I was at, they had someone do a skin check every week to make sure I don’t have any skin break downs. Also, the nurses are supposed to notice things too. One day, my mom did the diaper change and noticed that I had a patch on my butt. When she took it off, she noticed that I had a skin tear on my butt that was a pretty nice size. She went around asking the nurses and staff why nobody had notified my family and me of the tear. The nurses said they didn’t notice anything, and the person responsible for checking for wounds said that she did notice it, but wasn’t responsible for telling my family or me about it. That type of logic could have led to the tear getting worse or having multiple tears had my mom not noticed it.

Another time, my mom had stayed the night at the hospital with me. My mom and I were asleep, but my mom woke up to the lights suddenly being turned on. She woke up to seeing my nurse sorting through the garbage. My mom found it strange and asked her what they were looking for. The nurse said she wasn’t sure that she had given me the right meds, and she wanted to check the wrapping that she had thrown away to be sure. My mom’s and my thoughts were obviously WTH. The lady could have killed me without me knowing it.

Another time, I was complaining of chest pain. The nurses and doctors were telling me it was normal because I just had the trach put in. I thought it was something else, but no one would listen to me until my mom demanded that they do something. The doctor took an X-ray and immediately saw that I had a hole in my lungs and needed to have a chest tube put in.

Mental Health

Another thing I learned at the hospital is that you need something to do. Your people can only be at the hospital so much. There are going to be times when you are all alone. It is not good to be stuck in your head worrying about your medical issues.

Several things became my best friends in the hospital. I hate to admit this, but the Hallmark Channel became one of them. A psychologist asked me why, because it is the same story told over and over just in a different way. But that is the thing. I needed some consistency in my life at the time. I had no control over everything, but I did have control over what I watched. The consistency in their programming made me feel safe.

Another thing that became my best friend was TBS. I would watch Friends (which I begrudgingly watch) and The Big Bang Theory (which is my favorite comedy). I needed laughter. Something to make me smile. Something that would help me see the bright side of things.

The last things that help are my iPhone and iPad. Weirdly enough, I avoided all social media last year. Instead, I used both devices to watch shows that I couldn’t watch on the hospital TV. Mostly Paradise, The Righteous Gemstones, and the Chicken Sisters. I also used them to write a fan fiction story. My favorite thing that I used it for was the app called White Noise. I used it to mix several of my favorite sounds together. It made me feel like I was wrapped up in a warm blanket and helped me sleep.

Location, Location, Location

The last thing that I learned about my stay at the hospital is that it is all about location, especially if you have a severe ailment. I know that in a perfect world, all hospitals are created equal, but unfortunately, that is not true. In the area of Indiana I am from, there are no specialists in muscular dystrophy. I would have had to travel to Indianapolis, a 2.5 to 3-hour drive, or cross the border into Illinois, which takes 45 minutes to 1.5 hours, depending on traffic. It is disheartening that there isn’t a closer option for me.

The first hospital that I went to in Indiana didn’t know what to do with me. They put me on the vent, but didn’t know about my recovery. I stayed there while they deliberated that for a week, until I got moved to a hospital in Chicago. It made me feel better because I was around people who knew my disease, but it wasn’t all smooth sailing. At one hospital, they had me without an assigned nurse for two hours. The same hospital assigned me a nurse who couldn’t get my medicine out of a locked cabinet, and instead of finding someone to help, she just walked away.

Despite the unpleasantness of my hospital stay, I hope I was able to provide guidance so that you can have a smooth sailing if you find yourself in the same situation. If you take anything from this, I hope you remember the following things: have love one around you, protect your mental health, and consider the hospital you check in with. It could be the meaning between life and death.