Chuck's Testimony HB5277

When I went to the doctor's last week, I know he can't do much about it, but the door was really tight. There were two doors, the door from the waiting area into the medical offices. I'm used to the tightness.

When I'm waiting for the doctor to come in, I always hit the examining table, because the room is so small, and it takes up so much of the space.

Sometimes I have to back into the room, and I hit the table, because I can't see where I'm going. Couple of extra chairs and stools

The doctor (a pulmonologist) just examines me in the chair. This is just one doctor, but all of the medical offices are about the same.

A couple years ago, Hartford Hospital, I had something going on, and I started at UConn, and they sent me home because they can't find anything. Then, I went to New Britain [Hospital of Central Connecticut], and they told me the same thing. Then, I kept wheezing so Carmen (best friend and advocate; she's like my sister; her name is down as my sister) called my doctor's office and told them what was going on. They told her, "Send him to Hartford Hospital." So she took me out and got me there; I was supposed to stay in a hospital room for a couple days. The next morning, I ate my breakfast. I ate, and the next thing I knew, I was in the ICU. I passed out, and I woke up in the ICU. I had an oxygen mask on my mouth. When I ate, a piece of food had gotten into my lungs. The hospital called Carmen, and Carmen had to fight for me to be intubated. Finally, Carmen ____ and at the same time, Carmen called my dad. Carmen had told my dad what was going on. My dad wasn't that great at all this medical stuff, and Carmen had to explain to him what was going on in words he would understand. I woke up, and I couldn't talk and had that thing on me. He was worried, and he told me he thought he might have to put my obituary into the newspaper. I was there for two weeks. They took me out of the ICU and put me in a different room, a bigger room than here. They didn't take me out of bed for the entire two weeks. At the same time, I had my swallowing tested to see where the food was going. Someone told me five times I was never eating again. Carmen told the doctors to do another test by a different technician, because I didn't want the first one back. I took the second test, and the second person told me I had some hope left. After the test, doctors came in and put a tube into my stomach, without telling me anything or asking me questions. I said no, that I wanted to call my father and Carmen. They stopped for a couple of days, and Carmen and my dad asked questions for me. Carmen had some experience because she used to help Cathy (another New Horizons resident who used to have a feeding tube). That shocked me when the doctors came out to put the feeding tube and didn't explain. I was lucky I had my cell phone so I could call Carmen and tell her what was happening. Then I went to rehab, and in my head, I said I will eat again. My lungs are clear now, but every six months, I have to see the pulmonologist to make sure my lungs aren't worse. He listens to my lungs with a stethoscope to make sure I'm okay, and he asks me questions. He has a scale, but I can't use it, because I can't stand. I can eat soft food now. I can have hamburgers and turkey now. It took me, well...

Last June I had gallstones, and me and Carmen talked about going into Cherrybrook (nursing home) for a couple weeks, because over here there aren't people to help you. I went over there (to Cherrybrook) and I had doctors and nurses check me out. I had speech persons come in, and they asked about doing the test again, and I said sure. And then, they gave me all different things (different drinks, and put food ___ in it). And I did all the different drinks and tried eat a cracker. They put a camera in my mouth, and the speech person gave me the different drinks that I tested. After all that happened, they told me, "You can start eating now." I was shocked. That speech person worked with me on different things.

What got me; I was starting with a catheter in me, about two years. And when I spent time in rehab, what got me upset was that the nurses didn't know how to put it (a part he showed; a hydrocolloid adhesive sheath) on. At the same time, they didn't have my size. I had to call Carmen to bring some from here to Cherrybrook. When you leave, you'll see a machine by my phone that goes around my chest and shakes me up and helps remove/break up the stuff in my lungs. I had to bring it to Cherrybrook, and Carmen and my dad said that "He needs it twice a day." I was trying to do it, but the nurses said you need the doctor's okay, and half the time the nurses wouldn't put it on (last June before Covid). The machine was supposed to be on the table (it cost about twenty thousand dollars) but it was on the floor. If something goes wrong, it would be really expensive.

Yesterday, at UConn, they put me in a MRI machine on my stomach. I was scared on the table, because it was so narrow. I felt like I was going to fall off. There were four people there, and I was still scared I would fall off. I don't always have spasms, but I have them once in a blue moon. I'm lucky that I have not had a spasm and fallen off a table before. Then they asked me to hold my arms out, but I can't. They were trying to figure out how to do it. It looks like I was almost (demonstrated a position like a chokehold), because my arms don't go that high.

Back in November, I went to the doctor's to see about my back. Every time I went to UConn. They took all kinds of x-rays and MRIs. The back doctor told me and Carmen my back was broken, and our mouths dropped. He said the L2 and L4 (lumbar vertebrae) were broken. He told me there were three ways: 1. do nothing and let it heal on its own, 2. wear a brace, 3. stop and put a needle in my back to put cement where it's broken.

Going back to the x-rays, it was very hard to get on the table. UConn has a lift, but this one didn't. Four people lifted me on a sheet. They checked my gallbladder, and they used a ____(type of lift). My knees don't bend like you guys', and they tried to push my legs in the middle. That type of lift doesn't work on me, and I'm not the only one out there. They don't want to listen because they think they know everything and because it's hard to understand because of the speech disorder.