to be told that I shouldn’t interfere with other people’s treatment. They use the HIPPA laws to keep patients at bay.
Some of the technicians have been extremely rough. I was going home with severe bruises a lot of the first two years I was at Fresenius. I would get to the Center by the time they asked me to come and waited hours to get in. I have been put into treatment chairs and put on machines they had not been able to get to work for the last patient and then moved around in the chairs to other machines(in the chair with needles in my arms). When asked why they tried to put me on, “Just hoping it might work now” was the answer. The machine had not worked that day. I would end up sitting and waiting for long periods of time. I sometimes spent five hours at the clinic.
One of the technicians does not like me. She decided to take it upon herself to punish me for expressing how I was feeling. She stuck me with lydocaine and proceeded to place the needles in my arms before she had let the pain killer work. She did this several times and I complained that I had a right to refuse her as my tech. I was told tough they had a rotation to follow. I let them know that I had rights to say who put me on.
This technician then came back one day and decided I had gained 12 kilos in two days. She was going to take 6 kilo off. I had only gained .6 kilo. I pointed out that she had the wrong numbers. She yelled at me as if I had done something wrong. She then proceeded to put the needles in and slapped my hand when I tried to get her away. When I complained, the next session at the center was a reprimand. I was taken out of my regular seat and had the male nurse get in my face saying “My people do not do that” very loudly. I told him yes they did. As far as the attitude and actions of this tech, nothing was done. I received retaliation. She got the message loud and clear that she could do anything. The head nurse purposely assigned this person to me once again a few months later. I told the tech not to touch me. The head nurse told her that she was to put me on. I stood up and was going to leave. I told her to leave me alone. She came at me as though she was going to knock me down and may have. Another tech intervened and told her to go that she would put me on.
In January, 2011, I talked to the head nurse again about putting the tech that had been banned on my arm. The tech is very rough and if she doesn’t like you, it is worse. The head nurse said it was “tough”. I needed to deal with her. I told her no. She said “I just hadn’t adjusted to the life style. Some techs hurt more than others.” Numbers say I have adjusted just fine. I am healthier than I was two years ago. I don’t believe abusive behavior is necessary. The head nurse never backs up the patients needs. She stands with the staff right or wrong.
The Unit was told to take one needle out of the patients arm at a time. This is creating havoc on my fistula. The reason we were given for this was that some people could not hold two spots at once, so all of us had to sit with needles in our arms. This is not a healthy thing. I do not care what their reasoning is. With any other doctor, we can say no to a procedure. I have had to have my fistula totally rebuilt. I was told it should last a lifetime.
I have had needles in my arm and must go through the process of being put on 3 different machines because they are not maintained. Patients helping other patients are confronted by techs and told to “Get out of here” when they had been busy with someone else and the patient needed a blanket to be warm.
The technicians were taking too much fluid off of me. I would go home and literally pass out because my blood pressure would plummet. I had absolutely no control over my own body or treatment. I was given unnecessary drugs. Such as potassium baths that brought my potassium up to normal or made the number high. I asked the doctor why I couldn’t just eat what was natural, and was told I couldn’t control the numbers.
I kept telling the staff that I was extremely constipated. I ended up in the hospital with endometriosis because my entire colon was blocked. It took several days to clear out my system. There is no education for patients to know how to counter not being able to drink a lot of fluid. There is a dietician that gives us our numbers and tells us we did well or not. But she does not do much helping in the way of what to eat. I was told a lot of what not to eat.
Complaints are not posted. When I sent a complaint to Section 18 at the end of last year, all the information was considered “unsubstantiated.” Staff do not document what the patient says, only that the patient was a chronic complainer. Therefore, change doesn’t happen.
Recently, I have contracted MRSE. This, when I told my doctor and gave him lab proof, was said to have been contracted at my house. I have lived in the house for over 30 years. No one in the home has ever contracted this. It came from the Center. They take no credit for infections of any type. People are dying due to the “turning of heads” to the truth. They would rather people die than face the fact that MRSE is in the unit. We are required to prove that we infections. We are told to go to our general practitioners. Then, we are told that we did not get the infections at the Center.
This week, four of the eight chairs in the back room where I sit had either computer problems, time problems and one had a blood pressure cord torn out. This is a hassle for not only the patients, but for the techs.
I found out that my parathyroid is way off the charts. My doctor is giving me a low dose of calcitrin, but it is not doing the job. I was told that I should have gone to another doctor in November 2011. He kept telling me that I could not have another adenoma. It is suggested that you see someone if your number for PTH hits 110. Mine is now at 165, coming down from 333. The apathy is so sad. When I asked why so many of our patients were dying, I was told “Dialysis patients die.” Cold and empty. If they paid attention to the little things before they became life threatening, more of us would live long and happy lives.
It took me over two years to find someone who was not tied into the industry. Even the State I live in was not on the patient’s best interest list. I decided I would like to see what I could do to help others. We can be treated with dignity and care.
I found Arlene Mullin to be my advocate. She has helped me take charge of my treatment and I am treated much better. She intervened with the cruel technician and she is not allowed in the same room with me. Arlene has helped me get my life to a better space. She is on the telephone with me whenever I have a meeting with the staff. I sit in one chair, have only approved technicians putting in my needles and she helps anytime I have trouble. I am so grateful to have found her. I want to help others know that they can have a better, kinder treatment. I am allowed a cell phone to keep in touch with Arlene if needed. I finally feel somewhat safe here.