I agree with you that we shouldn’t piss off the person holding the “key” to relief. But if those people who are supposed to be giving relief instead of doing that if they are making us miserable we have every right to speak up. About the nurses we should speak to The Nurse Supervisor. And if the doctor don’t understand and refuses to listen we should complain to the Higher Authority which is responsible taking care of such things. Do you know that every hospital now has these small posers saying that patients should use their rights against the doctors or somebody who is taking care of us.
Couple of times I had to speak up against people who was bothering me than helping me. Now they are not allowed into my room. After some time my GI doctor asked me whether someone was bothering me and why didn’t I tell him. I said, some nurses helped me to complain against the person who was bothering me, it worked out that’s why I didn’t say anything about that incident. In another incident when I was rolling with excruciating pain and I asked for the pain medication and she comes and checks my vitals are fine and I have to wait until the doctor comes in the morning. They don’t like to get disturbed. Then I started screaming and yelling then the other nurse who has other patients came running asking what’s the matter and when she realized how much pain I’m in she called supervisor and the Supervisor called the doctor and told about my pain and he increased the dosage and also gave some Ativan to relax. Then in the morning I complained about the nurse who refused to give medication is not allowed into my room any more. I was so relieved. And when the doctors say something without thinking like I don’t think you are trying hard to eat normal food. I got so mad. I said, why won’t I try hard to get better and if the items of eating increases and if I’m doing better without tube feedings during the day time, then I just can use for night time. I don’t have to hook myself to it all the time and I’ll be free to do anything. Then he said, I don’t know what’s going on. I said, grapes are my favorite fruit and why would I try to eat them without skin, I tried to eat them just like that and I got pain so I have to try without skin and I did ok. At least I get to taste them than not stopping totally eating them. I don’t understand lot of things about you. I said, the whipple procedure is supposed to work out for me and I don’t understand why it didn’t work out, do you understand? I screamed at him. Then he said, in a low voice I don’t know either and left the room.
My stomach after so many procedures and many surgeries must have become very sensitive that’s the reason I ended up on the feeding tube, right! Why don’t they accept such simple fact. Don’t I want to eat food normally if it works out than stuck to a feeding tube. Another time they tried to send to the same surgeon who performed the puestow procedure to get the new feeding tube as they touched me and cut me, the surgeon’s at the hospital where I go usually for my attacks refused to put the tube. I said, I don’t want to go there no matter what. When one surgery doesn’t work and especially in the hospital you had very bad experiences why would I want to go there? One GI doctor got mad and said, we are trying so hard to get better treatment as possible and you are no co-operating. I said, no matter what you are not making me go there. I don’t know if you don’t want to go to the best surgeon at Jefferson’s where do you want to go and then left the room. Next day my GI doctor came and was ready to listen why I’m not ready to go to the same surgeon. When I told all the experiences, he said, then it’s not good for you to go back there, it’s not going to do anything. I’ll try to talk to my friend surgeons at another hospital. He did and I was admitted thee and I got the tube with a minor surgery.
I know it is hard to put up a fight with these people, but as the time goes by they’ll realize that I’m not going to shut up and use every single opportunity to shut them up and make them listen to me. They are nice doctors sometimes they get frustrated that they couldn’t fix the problem for me. When I was having tough time they were so nice to me and tried to help as much as possible by listening, by giving letters to get my mom here soon. When they are nice we should be nice, when they are not we have to speak up and get the things we want to get and also some respect.
I’m not saying this may work for every one or not but I tried always and it worked out for me. WE have to learn to be strong because we go to hospitals to get the treatment and also feel comfortable and if we don’t give that there is no reason in going there. It depends on the doctors also if they are going to take what we are saying seriously then it works. Sometimes they have to listen to me and sometimes I have to listen to them when they are trying hard to do something for me. One time I lost too much weight and I refused to go get the new tube and the doctor got stubborn and he said, he asked the ambulance services to pick me up and get admission at PENN hospital to get the feeding tube, because they can’t let me dying just like that because I was depressed and was fed up with the infections of feeding tube. So, if they didn’t do it taking the case in their hands I wouldn’t be here today. I mean I’m going there for the past 9yrs and everybody knows me, all the doctors so well and the sometimes I get wonderful nurses who listen to me if I was feeling lonely. If I have everything I need and I can manage to go to bathroom I don’t bother them if they are too busy. My friend who knew lot about doctors because her sister was Cancer patient made me learn how to talk to doctors, how to question them and get all the answers I need from them etc. I was lucky to have good friends who were ready to help me in every way.
If the system doesn’t change we have to change and try to get things done for us by fighting for them.
I gave my experiences and how I faced the situations sometimes they really worked for me. I still go by the saying if you are nice to me I’m going to nice with you. I didn’t mean to hurt anyone’s feelings and maybe the situation you were in was totally different and you couldn’t do anything and even you did try also it might not worked for you. I hope you understand and think what I’m trying to say.
Lots of love to all of you and many hugs.
Durga
