Coping With Myasthenia Gravis

In 1995 I was diagnosed with Myasthenia Gravis I was 15 years old. It all started when my tongue started feeling funny earlier in 1995. It began to get harder and harder for me to talk. I didn’t know why and I didn’t want to tell anyone either .My tongue just got heavy and I thought that it would just go away after a while. Well…I started having difficulties talking to people and answering the phone. No one was able to understand me due to the slurred speech I was developing.

So after a few months of this, I began feeling very tired all the time too. One night in July of 1995, my aunt, her friend and I were going to get some donuts and I became very weak. I asked to be driven home. When I got to my grandmothers house, I laid down on the bed and remember having everyone around me asking if I’m ok? My mom tried to give me a cup of milk and I remember I was so weak that I dropped the cup of milk. My mom asked “Trell why did you drop the cup?, I said “I couldn’t grip it.”

Then my mom went and refilled the cup of milk and tried giving it to me herself. The milk just rolled down my mouth and the side of my face. I told my mom that I couldn’t drink it because it wasn’t going down. My right eye began drooping as if it was going to close. I had no control anymore of my bodily functions. She asked if I wanted to go the doctor and I said yes. So my mom, my dad, and I were on our way to the hospital and I was blacking in and out. My mom was talking to me to keep me woke.

When we got to the hospital, I remember being wheeled chaired in straight to a bed where it looked like hundreds of doctors were. They were asking me questions and pulling me left and right. They were undressing me, redressing me, taping things on me, talking to me, questioning me it was crazy. I remember talking to my mom and dad at one point then blacking out. Whenever I’d awaken I would just start talking as if I had been the whole time.

My mom told me that I was going in and out but I didn’t realize it .I remember getting oxygen through a mask because I couldn’t breathe on my own. I remember the doctors telling me that we we’re going to go upstairs .I was on a breathing machine so they were warning me that they needed to unplug the machine to get me upstairs to the ICU and for me to take some deep breaths before they would unplug it. They counted to 3 and unplugged the oxygen.

I remember running through the halls with my mom and dad trying to get to a waiting elevator for us. I remember being on the elevator and my air was constantly running out. I could no longer breathe. I began to panic. I pulled the doctors’ tie and pulled his face to mine and tried to let him hear that I was gasping for air. He said I know sweetie, we’re almost there just hold on. I guess I blacked out for the last time because when I woke up, I was intebated (on a breathing machine). I was upstairs in the ICU on life support.

I just remember lots of tubes and cords and all sorts of stuff on me and in me. I remember trying to sit up and being gagged by the tube in my mouth. When I opened my eyes I saw my mom there crying over me. I didn’t know had happened to me. I couldn’t talk so I signaled to my mom that I wanted to write. It was even hard to write because of the IV tubes in my arms. I would put the pencil in between my index and middle finger sticking it straight up because I couldn’t bend my hand to write. I’d write to my mom things like, am I going to die? Why is this happening to me? Was I a bad girl? I remember her reading my notes and running out of the room crying afraid to answer me.

All day, everyday I was having test being ran on me .I was listening to doctors standing over me and talking about my condition to my family members as they were there visiting with me. Then I remember being told that I would have to have surgery to get better. The surgery was called a Thymectomy. It is to remove the thymus, which they found out helps people with MG like me.

I was soooooo scared and confused because nothing like this has ever happened to me or anyone in my family that I knew of. I couldn’t talk, defend myself, ask questions, and say mom or anything. For once I felt helpless. I had no control of anything. I hear all these plans and doing all this stuff to me and I just had to take it.

I remember having the surgery and having a huge cut all the way across my chest. It was painful during the recovering process. The scar went from under one arm pit to the other side. They tried to comfort me by saying that it would be on my chest but they will make sure that as my breast continues to develop, the scar would not be seen. I listened to them but I didn’t like the idea of having this huge scar on my chest for the rest of my life but I guess if it’s what I had to do then ok.

I had like 100 stitches across my chest. I remember the nurse telling me I had to cough and walk for them to prove that I can go home after the surgery. I thought I would never go home because I wasn’t about to cough or walk feeling like I had just been sliced in half. I held a pillow up to my chest and tried to cough. It feels like death I thought. I cried every time I had to do it because of the pain. Then it was time to walk a few times a day. I was bent forward for a while scared to stand straight up but eventually it did get easier. Then I was moved out of ICU and on to the floor with the sick but not so sick people. After a few weeks on the floor, I was discharged.

I remember going back to my grandmother’s house because I needed around the clock care. About a week and a half went by and I relapsed on my grandmothers’ floor. I remember blacking out and when I woke up I was intebated again. I couldn’t believe I was on life support again. I stayed in the hospital for a short while this time and I was discharged again. I went home to recover for the second time and was admitted at least 6 times after that for pneumonia due to the huge open scar on my chest. It has been over 10 years since I have suffered with any serious problems but I still however find myself having some of the minor problems like fatigue and muscle weakness.