God Allowed Our Paths To Cross

clinic. I was then approached May 11, 2016 by the social worker at the Highland Clinic and advised that the new clinic is trying to make a decision if to take me or not. My life was on the line and so uncertain at that point. I felt I was being blackballed and no one would accept me. I was very stressed and didn’t know what to do. Here I was being terminated from the clinic for voicing my opinion to Management about the negligence I was experiencing. I had two meetings approximately one year apart expressing these concerns. I was not advised what they did to address my concerns or what the next course of actions would be. These concerns were not only for better treatment for myself but the other patients at the clinic I had befriended and were subject to the same neglect. There was something very wrong with this I thought. Also, my HIPPA rights were being violated. Here I was being terminated from a clinic on the dialysis floor in front of other patients while taking dialysis. I begged the doctor to wait and discuss this matter when my husband could be present, which he initially agreed to. He changed his mind and felt I was just prolonging things. I surrendered to this harassment and just accepted his letter. What about my Patient Bill of Rights to have a say in my care and my HIPPA right to privacy. I felt both had been severely violated. My husband and all of my family members were frantically trying to find answers and it was by the grace of God that my cousin in Washington DC, read about a dialysis advocate. There was a light at the end of the tunnel. Her name was Arlene Mullin. I reached out to her on May 2, 2016 by email and she immediately responded and forwarded forms of appointment and she requested a brief summary of my issues. The forms were completed and forwarded to her and I advised her of my situation and forwarded my concerns in writing along with the rebuttal letter I had written for her review. On May 16, 2016 we spoke and she indicated what was being done to me was illegal. She indicated she would get right on it. After her involvement, on May 18, 2016 after receiving my treatment I was told by phone by the clinic receptionist at the Highland Clinic that a chair for me was available at the new clinic at 11:45am Friday, May 20, 2016. I chose to begin my treatment there immediately. I believe in my innermost that it was because of the involvement and assistance that Arlene provided me that I was given that availability at the new clinic that day. Thank you Dialysis Advocates for helping to save my life. My husband, my family and I are eternally grateful. Antonia Watson

ceiling and ventilation vents and making notes on clipboards. I asked one of the dialysis techs what was going on and that person informed me that they had found toxic mold in the ventilation system. So I asked the Clinical Manager if there was toxic mold in the clinic. He stated and I quote, “Yes, I mean no. Jim, really, what is mold”. I told him I was going to leave his clinic and go to DavVita, which I did. As far as I know, none of the other patients were informed about the toxic mold and the doors were never closed. A few weeks went by and I started to receive phone calls from the Director of Operations at the other clinic, she asked me what happened in Melrose Park and I told her what I knew. She also questioned me about the name of the person that told me about the toxic mold. I did not give her the name. She then started to ask me to give her clinic another try and literally begged me to come back. I told her no way was I going back to Melrose Park. She said she could set me up at Willowbrook or Westchester. So I started going back to Willowbrook. She also told me that they had an inspection and had a “bio-chem” report done by a non-biased company at the Melrose Park clinic. She said she would send me a copy of the “report”. After several weeks and several follow-up phone calls to Caroline, I finally received the report which was actually a letter from the head of maintenance at Westlake Hospital which is where the Melrose Park Fresenius is located. The letter stated we checked and didn’t “see” any toxic mold. So there was no “bio-chem” testing done. Basically what I received was a letter from the head janitor saying there was no toxic mold, everything looked good. Since then, they have let go both the head of the clinic at Melrose Park, and the Director of Operations. So I am the only one left with any knowledge of what happened at Melrose Park with the toxic mold. And now they are trying to get rid of me. Fast forward to 2016. On Saturday, January 16th, at 9:00 A.M., two hours before my 11:00 A.M. chair time, I received a phone call from Clarence, one of the RN’s at Fresenius in Willowbrook. He told me that my chair time had been cancelled and that I was “banned” from the Fresenius clinic because they said I made threats. At about 4:00 P.M. that afternoon, I received a priority mail envelope with a letter from Fresenius, that my Nephrologist, Dr. May Chow was aware of and signed off on, stating I had been discharged from Fresenius, effective immediately, because I had supposedly made a threat that I was going to run the clinical manager, down with a car. And also that I wanted to get a rifle and shoot someone. I never made any of these threats and in fact, I am a bilateral below the knee amputee. I haven’t driven a car in over ten years.  We were also informed by Fresenius’s main admissions department that I was not “welcome” at any Fresenius clinic. I received a phone call from Dr. Chow the following week that even though I was no longer at the Willowbrook clinic, she was still willing to keep me as a patient.  Interesting, since she signed off on my being banned because I was so “threatening”.  If I was a physical threat to anyone, why would she want me as a patient.  I told her I would find a new Nephrologist and that she should not call me again. I was in the hospital five times to receive dialysis.  During one of these hospital stays, the primary doctor ordered a psychiatric evaluation to decide whether or not I was mentally competent and the psychiatrist informed me that he may have to testify in court as to my competency so I had better cooperate with him. I answered some of his questions, until he started with the numbers game to see if he could trip me up and confuse me. I told him to leave my room now. As soon as he left, I called Arlene from Dialysis Advocates. Within five minutes of hanging up with her I had three different doctors in my room asking if I needed anything and was I comfortable. Arlene told me it was a tactic they used to shift the blame of what transpired to the patients and off of the doctors and dialysis clinics and hospitals. The hospital social workers, my insurance (Aetna) case manager and my fiancé all tried to get me in to another clinic but were unsuccessful in their attempts. One of the clinics turned me down because they said my medical records from Fresenius stated that I had “behavior” problems and that I was “disruptive and uncooperative”.  The DaVita clinic I tried to get in decided, with no physical examination on their part, that I needed to be in a nursing home because I was too sick and could not take care of myself. It was only because of the help I received from Arlene at Dialysis Advocates that I am at a US Renal clinic. With one phone call to the CEO of US Renal she was able to get me a placement.  Thank you Arlene and Dialysis Advocates.  I am still alive because of the work that you do on behalf of dialysis patients all over the country.

Sincerely,

James Kasiewicz

my patient rights although seriously violated, were minimized by the networks set in place to support the rights of dialysis patients. I tried to transfer from DCI 30 days after admission to the clinic. I was mysteriously blocked from getting in to any of the other surrounding clinics that I attempted to get into. As part of my grievance I complained that the nurse manger influenced my getting away from DCI by possibly influencing the other clinics not to take me based on my need for individualized treatment. When I questioned my treatment or rather my first unprofessional encounter with the nurse manager, she stated that I could not even get help from the corporate office. The nurse manager stated that they would just refer me back to her. The nurse manager made me feel that I had no way out, she continued to misuse termination of treatment forms; frequently cutting my dialysis treatment time. I was essentially bullied. When I would attempt to calmly discuss my concerns with the nurse manager, she would become loud and argumentative. On one occasion she without real reasons cut my time in the middle of my treatment and was concurrently picking an argument while doing it. I had a mild panic attack accompanied with an elevated blood pressure. My spouse was sitting beside me. I asked her to leave my chair and she would not. The technicians and other nurses looked on as she mistreated me and was not allowed to support me regarding what they had witnessed. My spouse and I emailed the administrator about our concerns. He would only send FedEx letters to our home for us to schedule a meeting with him. The administrator appears remote from situations in the clinic and we did not think it wise to meet with him unless he was prepared ahead of time with the concerns we wanted to discuss in the meeting. Therefore, we wanted him to provide us with the documents that were missing from my admissions packet regarding the DCI grievance procedures. We wanted to document our concerns first and then schedule a meeting with him and the nurse manager. Part of the grievance would include how the nurse manager essentially ignored my dialysis prescription. The nurse manager prescribed out of her scope to me an insufficient dose of medication that had an adverse effect on my parathyroid. Then over dosed my Epogen. I discovered later that these adjustments were made without my knowledge and without a physician’s involvement or signature when my initial Interdisciplinary Team (IDT) meeting. The grievance would also include the misuse of termination of treatment forms and rude behavior. I called the network regarding my concerns and they made suggestions to first remain anonymous and go through the health department. After all was said and done my anonymity was violated by the surveyor who visited the clinic. The surveyor spoke with many patients, but once my chair was approached, the surveyor verbally stated, “You don’t always get what you want.” I later put in a complaint regarding the surveyor’s actions. There was never any response regarding that. I could hardly benefit from any form of patient rights procedures. There were none in place in this DCI clinic. It was apparent that the network at that time nor the health department was working fully in my favor. There was just an appearance of paper compliance to get by whenever surveyors appeared. However, for me and I am sure many other dialysis patients, there are hidden horrors in this DCI clinic. It became apparent to me that since I was a patient who documented, question and speak up, I would be the patient who would experience these horrific attitudes from the management level. Many times I would complain to the social worker about my concerns because I was becoming severely depressed. The social worker appeared almost helpless to offer any relief. It was clear that her position was controlled by the nurse manager. She seemed afraid to provide psychosocial support. I wasn’t saying anything derogatory to her about the nurse manager. I just needed support to not give up on my treatment. Since I wasn’t getting anywhere at the administrative level of the clinic I called the DCI corporate office regarding my grievance. I was directed to risk management. After expressing my concerns to risk management, they rudely stated that my complaints were not substantiated or rather legitimate. The representative for risk management at the DCI corporate level proudly stated, “Our nurse manager at the DCI Prince Road in Tucson is one of our best nurses and we stand behind her no matter what your complaint is.” Oddly, the risk management department suggested my going through the grievance procedure. I mentioned to them that I had attempted that and there was no success. They had me on speaker phone with others in the room. The conversation ended with no resolution in my favor. I felt lost and frustrated. I decided to request a meeting to discuss my grievance. Since there was no real grievance process in place, I commenced to writing out my complaint by email. Once my complaint was reviewed, the administrator and the nurse manager did not like my complaint. I was given a behavioral stipulation to sign for requesting a grievance with the audacious blessings of a Medical director. The social worker whom I lamented to a day prior to this meeting that I was so depressed that I wanted to go into hospice, sat quietly in the corner knowing my pain. She applied her signature to that awful illegal document. When I asked the administrator how can you arrive at this and I never hear my grievance? The administrator stated, “You had your grievance when you called corporate.” I refused to sign. I remember my spouse and I was up all night documenting our concerns regarding their actions and preparing for the worse from this clinic. The document that I refused to sign was mailed certified to my home. I picked up from my mail box on a Friday. That weekend was so distressing for me, that I developed severe chest pains and my spouse called an ambulance to our home. It was discovered that my blood pressure was too high. Surprisingly, the paramedics wanted to know what was going on and we generically stated that we were having medical problems in the area. I declined going to the hospital. We realized that this was just too much to deal with. The administrator rescinded the action, but my grievance was still never heard. My emotional injuries still existed. I was still trapped in a clinic that I could not get away from. Although the network was instrumental in their rescinding the behavioral document, the network was not facilitating other essential patient rights. My grievance was being swept under the rug. My spouse called Dialysis Advocates. It was discovered after Dialysis Advocates involvement that the network’s was not addressing the totality of my situation with the DCI clinic. The ESRD network was not fully assisting with my patient rights to get into another clinic and away from the substandard care that I was receiving at the DCI clinic. Although the networks regulatory website states otherwise, the network in many ways by their inactions, seemed to condone my not being admitted into other clinics based on my individualized needs. Dialysis Advocates involvement revealed that these clinics were violating my rights under CMS conditions for coverage. In other words, what the network did was like a half swept floor; Dialysis Advocates cleaned it up. Dialysis Advocates cleared the smoke to reveal the illegal and unprofessional behavior of the DCI dialysis clinic; paving the way for me to get back to dignified dialysis treatments designed to extend life. Arlene, you created something beyond a respite for me as I exit this DCI clinic where there was none to be found. On my way back home, I feel safer as a dialysis patient that I am truly cared for from the heart and that I am more than a body in the chair. You helped me retain that I am still an individual with a life looking forward to possibilities. The good dialysis care that I yearn to have again, your advocacy has made possible for me to have. Thank you from the deepest part of my heart for helping me. Sincerely, Vanessa E. Winters

I dumped the girlfriend and changed residences. I almost became homeless in the process, but managed to keep it all together. I kept my mouth shut about the problems with the dialysis center, fearing disclosure would get me terminated from the program. My suspicions turned true when the ex — now extremely jealous — got in touch with the dialysis center and ratted me out to the clinic, for being on home Hemo without a partner. I was instantly kicked out, no hearing, no due process, no chance given to explain myself. Boom, you’re done, go somewhere else. The nurse was so pissed off, she wrote up my medical record in such a way that I became “blackballed,” that is, no other clinic would take me in. Essentially, I was being put to death, without a fair trial. For two weeks, I was cut off from supplies, and medical care, but managed to survive. That’s when I found Arlene Mullin at Dialysis Advocates, while searching for help on the internet. Many other patients across America suffer from the same mistreatment, caused by a depraved indifference of a self-regulated, profit-driven dialysis industry. Suddenly I was no longer alone; I had a cavalry of advocates and lawyers on my side, provided at no cost whatsoever. All the while I wondered to myself, who is this stranger and will she really come through for me, and save my life? The answer was yes. Two weeks into the ordeal, while opening the very last box of supplies keeping me alive, I got notified that the dialysis center had knuckled under the enormous pressure levied against them to reconsider my case. The story is not over, much more needs to be done, both to protect my own status, as well as my fellow travelers in this collective nightmare. I am eternally in Arlene’s debt, and she has earned a lifelong supporter, so long as this body should last. Robbie Waters

take me. I was being black-balled and turned out into the cold in retaliation for exercising a provision in our ESRD Patient Bill of Rights by filing legitimate grievances with the clinic. When Arlene learned that I was a 100% service-connected disabled veteran, she was even more determined to stop the discharge action and went to bat for me with officials from the ESRD Network, Medicare and her veteran’s contacts. She was amazing and essential in me finding a local clinic willing to take me and eager to help a veteran. I cannot thank Arlene and Dialysis Advocates enough for their efforts afforded to me but also too many dialysis patients across America are being unfairly discharged and needing help to continue living. Bravo, Arlene, and thanks again for your diligent and knowledgeable assistance.   William Brown  

us emotional support and helped us stand up to the Dialysis Center who defended their workers criminal actions. My mom and I are grateful that Arlene came into our lives. Continue to do Gods work and may he bless you.

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.

and witnessed some guys walking around looking at the ceiling and ventilation vents and making notes on clipboards. I asked one of the dialysis techs what was going on and that person informed me that they had found toxic mold in the ventilation system. So I asked the Clinical Manager if there was toxic mold in the clinic. He stated and I quote, “Yes, I mean no. Jim, really, what is mold”. I told him I was going to leave his clinic and go to DaVita, which I did. As far as I know, none of the other patients were informed about the toxic mold and the doors were never closed. A few weeks went by and I started to receive phone calls from the Director of Operations at the other clinic, she asked me what happened in Melrose Park and I told her what I knew. She also questioned me about the name of the person that told me about the toxic mold. I did not give her the name. She then started to ask me to give her clinic another try and literally begged me to come back. I told her no way was I going back to Melrose Park. She said she could set me up at Willowbrook or Westchester. So I started going back to Willowbrook. She also told me that they had an inspection and had a “bio-chem” report done by a non-biased company at the Melrose Park clinic. She said she would send me a copy of the “report”. After several weeks and several follow-up phone calls to Caroline, I finally received the report which was actually a letter from the head of maintenance at Westlake Hospital which is where the Melrose Park Fresenius is located. The letter stated we checked and didn’t “see” any toxic mold. So there was no “bio-chem” testing done. Basically what I received was a letter from the head janitor saying there was no toxic mold, everything looked good. Since then, they have let go both the head of the clinic at Melrose Park,Richard, and the Director of Operations, Caroline. So I am the only one left with any knowledge of what happened at Melrose Park with the toxic mold. And now they are trying to get rid of me. Fast forward to 2016. On Saturday, January 16th, at 9:00 A.M., two hours before my 11:00 A.M. chair time, I received a phone call from Clarence, one of the RN’s at Fresenius in Willowbrook. He told me that my chair time had been cancelled and that I was “banned” from the Fresenius clinic because they said I made threats. At about 4:00 P.M. that afternoon, I received a priority mail envelope with a letter from Fresenius, that my Nephrologist, Dr. May Chow was aware of and signed off on, stating I had been discharged from Fresenius, effective immediately, because I had supposedly made a threat that I was going to run Marlo, the clinical manager, down with a car. And also that I wanted to get a rifle and shoot someone. I never made any of these threats and in fact, I am a bilateral below the knee amputee. I haven’t driven a car in over ten years.  We were also informed by Fresenius’s main admissions department that I was not “welcome” at any Fresenius clinic. I received a phone call from Dr. Chow the following week that even though I was no longer at the Willowbrook clinic, she was still willing to keep me as a patient.  Interesting, since she signed off on my being banned because I was so “threatening”.  If I was a physical threat to anyone, why would she want me as a patient.  I told her I would find a new Nephrologist and that she should not call me again. I was in the hospital five times to receive dialysis.  During one of these hospital stays, the primary doctor ordered a psychiatric evaluation to decide whether or not I was mentally competent and the psychiatrist informed me that he may have to testify in court as to my competency so I had better cooperate with him. I answered some of his questions, until he started with the numbers game to see if he could trip me up and confuse me. I told him to leave my room now. As soon as he left, I called Arlene from Dialysis Advocates. Within five minutes of hanging up with her I had three different doctors in my room asking if I needed anything and was I comfortable. Arlene told me it was a tactic they used to shift the blame of what transpired to the patients and off of the doctors and dialysis clinics and hospitals. The hospital social workers, my insurance (Aetna) case manager and my fiancé all tried to get me in to another clinic but were unsuccessful in their attempts. One of the clinics turned me down because they said my medical records from Fresenius stated that I had “behavior” problems and that I was “disruptive and uncooperative”.  The DaVita clinic I tried to get in decided, with no physical examination on their part, that I needed to be in a nursing home because I was too sick and could not take care of myself. It was only because of the help I received from Arlene at Dialysis Advocates that I am at a US Renal clinic. With one phone call to the CEO of US Renal she was able to get me a placement.  Thank you Arlene and Dialysis Advocates.  I am still alive because of the work that you do on behalf of dialysis patients all over the country. Sincerely, James Kasiewicz  

in my 20’s. This disease has contributed to many of my ailments. I started dialysis in March of 2009. It was a life changing event for me. At first just dealing with the treatments and how they made you feel was overwhelming. As time went on I felt obligated to myself to learn about dialysis and I was curious how the machine worked. I started to educated myself on dialysis, how to conduct dialysis, the different ways there are to receive dialysis, and what to do in case of any emergency. Thus my efforts to educate myself started me down a path that at times I wish I never started down. I started to notice many mistakes the NURSES AND DIALYSIS TECHNICIANS WERE MAKING! Seemed very odd to me how many mistakes they were making. But I must say that the biggest mistakes made today are in the Infectious Control Procedures, or LACK OF! It is not uncommon to see NURSES or Tech’s touching a dialysis machine without gloves, with gloves not on their hands but just over their finger, pour out the reservoir on a machine and not disinfecting it before putting it back on the machine. As I started to see these mistakes I became concerned and voiced it to the staff at DaVita in Lancaster, Ca.  My first complaint was that we sat in our dialysis chairs waiting for one of two nurses to come in for work. We could not start until a nurse was present, the longest I waited was 1hour and 30 minutes but the average was just over 30 minutes. Come to find out that a nurse has to sign documents, check machines and sign off the water before anyone is allowed in the facility. Well as a nurse would hit the lobby door, the techs would stick the needle in my arm. So I want to know how all the things that a nurse was suppose to do, got done when a nurse was not present? And of course this became my problem in a very short time. The straw that broke the camel’s back was twofold. One, upon coming in on Feb 13, 2012, I noticed my artificial kidney had my name hand written on it in permanent ink, when I went to check to type written tag it was not my name! I was pretty upset to say the least as this could be a life threatening event! I complained again, as a matter of fact I complained multiple times to the STAFF, not only the nurses but the Facility Administrator. I decided to leave this unit and was in communications with another dialysis unit when the social worker from DaVita called me to tell me the other unit has turned me down! I was very confused until my doctor at the VA told me that the same social worker from DaVita had called the VA to complain about me and I QUOTE “He is so disruptive that we are not sure how much longer we can dialyze him”, but that’s not all. I was under attack from DaVita! I will list a few things that have happened to me at Lancaster, Ca. DaVita, When I asked about my blood test results, I was told by my nurse “What do you think, you’re a doctor”. After the name mix up I requested to be taken off of reuse ( they would clean and re use my artificial kidney) I was given the smallest artificial kidney  made, I am 240lbs! I started to feel ill after dialysis and when questioning the nurse about the size of the kidney I was told, “YOU ARE THE ONE WHO WANTED OFF OF REUSE”, now this is my NURSE TALKING TO ME! I went in one morning to find a new chair at my station, well the new chairs did not fit me like the old ones and I asked to have it changed. Leo another patient said that he had an old chair and would like the new one so we swapped chairs. In the middle of being dialyzed I noticed that Leo was changing chairs, when I asked him why he said that someone has smeared shit on the bottom of the seat and he could not take the smell! All I thought was, that was my chair! Then on another day all the machines on my side of the room had to be changed out as they did not work when we were hooked up to them! How does that happen? I was given a hepatitis shot one morning and a half hour later was almost given the same shot over! At this point, I wanted to know anything going into my body! Anything! When I questioned the nurse, she said” The paperwork was not done”.  I have not mentioned the lack of Infectious Control! I have a great way to check this! How much does a unit spend on gloves a month! Bet the units that do not do it correct are not spending as much as one that does it correctly! I told my tech, it’s nothing personal, but I expect you to do it correctly for me! It’s my life, you may get fired but I may end up in the hospital or worse and die! I feel like I have been dealing with the Mafia! They, DaVita, can do anything they want with no responsibility! I have had them try to ASSAULT MY CHARACTER, LABEL ME AS DISRUPTIVE, and HARASSMENT AND RETIRBUTION FOR TRYING TO BE AN ACTIVE RESPONSIBLE PATIENT! Seems DaVita likes you better if you just lay there and take their treatments without a word or a question. Guess I could write a book! This year has been very trying for me. Trying to deal with my illness and trying to deal with DaVita as the same time has put my health in serious trouble. All I want is safe, common sense treatment! I believe every patient deserves this type of treatment! Thanks, Michael J. Meza

To better the situation and to emotionally heal, I voluntarily agreed to remove myself from nocturnal to the day shift for a month until an investigation was done concerning my complaints. I recently found out the Ms. L never submitted the sexual harassment complaint letter but revealed everything that was told in confidence to her in sessions between her and I. When we had these sessions (10 in total) she told me that she could not reveal anything that was said unless I gave her permission to and I never did.

I am now being retaliated against due to my complaints. On May 30, 2012, I was asked to leave the facility and was escorted out the clinic by an HPD officer. I was told that due to my disruptive behavior by submitting complaints to the corporate office and to Department of State Health Services, I have 30 days to find another dialysis facility and that my kidney doctor Dr. M, who is the Medical Director for the DaVita Omni clinic, could no longer be my doctor. I am also a recent below the knee right leg amputee in a wheelchair and posed no harm or threat to anyone within the facility so I saw no need for a HPD escort. I have had meetings and sessions in the past with administrators without this happening and could not understand why these events are taking place now due to my complaints as a patient. I am asking that Dialysis Advocates would please investigate this matter for me and help me in seeking justice for the way I was mistreated as a loyal and compliant patient of six years at DaVita Omni. I thank you in advance for your cooperation in this matter…. I look forward to hearing from you or a representative.

Respectfully,

Edwin Flannigan, Patient

Dialysis Advocates contacted CMS and was made aware of Edwin’s situation. State of Texas conducted an inspection, we helped him get into a new clinic and has retained legal counsel.

They would try to change things around and cover it up, and then harass me on daily treatment days by Davita Management. You all must understand I was treated very badly by the head nurse and the Administrator at the Wilmington Facility being harassing most of the time while receiving my treatment. I was lied to on falsely documented things, they covered up mistakes and tried to get the staff to do the same. When I filed grievance complaints most every one of them were not investigated properly and all ways turned around to make it like I did wrong when they knew that the procedure where not followed properly. Such as: ?  In June and July, I was mistakenly cannulated twice with the wrong needle causing requiring emergency surgery and a hospital stay. I filed grievance, the Administrator would not own up to mistake. Because of these injures I had about six surgery and need to get one more in the near future. ?  In November 7, and 9 of 2005 I was giving Venofer Iron Sucrose by mistake with no Doctor orders.  I filed a grievance, and administrator took weeks to answer back but said it was a computer error, I told them about this the first time it happened, but two days later it happened again. ?  In the end of September until December of 2006 my maintenance Heparin was stopped, when I filed a grievance, the administrator fist lied to me and had the nurse lie and tried to cover it up.  I filed a complaint with the North Carolina of Health and Human Services Division of Facility Services, they came on April 24, 2007, investigated and found that Southeastern Dialysis of Wilmington ( Davita ) failed to ensure heparin was administered as order by the physician “Heparin Bolus “ 1000 units from 08/30/2006 thru 12/06/2006 (42treatments ) ?  In November 15 2007 I received a Federal Express letter putting me out of the Wilmington Dialysis facility and all of their facilities, only one day notice. ?  I contacted Southeastern Kidney Council, Inc.  November 21, 2007 I received a letter back stating that due to the regulatory nature of the complaint it had been referred for investigation to North Carolina Health and Human Services Division of Facility Services. ?  Then on December 31, 2007 I received a letter from North Carolina Health and Human Services Division of Facility Services, stating that they were not able to investigate my concerns due to non-regulatory allegations. ?  If it was not for the help and guidance from one of the Best Patient Advocate Arlene Mullin and God I might not be alive today. Since I was not able and was not going to travel to another State to get treatment, I went to my local Hospital ER and they admitted me for treatment. Arlene knew I was depressed and about to give up because no one would help me, Davita  tried to destroy me mentally and physically, she contacted me every day, sometimes two and three times a day. She always told me to keep a smile on my face, things will get better. She got me in contact with Carl Ginsburg an attorney that helped me out so much. ?  Arlene had a conference call with (CMS) Department of Health and Human Services Centers for Medicare & Medicaid Services to come and investigate why I was discharged. On 02/29/2008 Davita was cited for not following standard procedures, and that I was involuntarily discharged from the facility without an advance notice of discharge.   OUTCOME Since Arlene of Dialysis Advocates intervention I’ve been getting dialysis treatment at this hospital for over four years my health is so much better and I feel much better, have not been hospitalize for any sickness so far. Only well trained nurses do my treatments. On October 16, 2009 Davita was found guilty by negligence for my injury.

Also, thank you, in assisting me with transportation during one of those crucial times I had to travel to Houston in order to check on my mother in the hospital. I will always be grateful for the help and guidance you provided. It is good to know that dialysis patients have advocates like you in their corner for support. Sincerely, and God Bless, Chimela Soublet

on my feet. I am a diabetic, so this type of accident could cause me serious consequences. This was followed by kicking my legs and bumping into me. The staff would always apologize and say it’s an accident. Every treatment! No that not an accident, it was being done on purpose. In the beginning I had a catheter the nurse would leave the catheter uncovered while she ran around getting supplies and helping other patients. I believe their unsanitary habits lead to me acquiring sepsis. The catheter was pulled hard enough to make me cry “ouch”. The staff sprayed saline in my face and on my arm, dropped blood on my arm, tape burns, slapped my face with the blood pressure cuff, clotted my machine 6 times in one month and insert the needles after applying alcohol in a generous amounts and before it dries to cause a burning sensation. The worse and most dangerous abuse is when they remove the needles and allow the blood to spill all over the floor and on my clothes. These abuses occurred every treatment and by all staff members. Other patients were receiving the same abusive treatment, but they are afraid to come forth for fear of retaliation from the staff. I complained at first to the charge nurse; the abuse continued. The staff told me to stop complaining. Well I went to the director and reported the physical abuse I was receiving. That turned out to go against me. The staff began to bully and intimated me. They told me if I didn’t stop complaining know one would work on me. Then I tried to tape a tech removing my needles and spilling my blood on the floor. The director wrote up a behavioral contract stating I was not allowed to video tape and that I was being disruptive in the clinic. Up until this point family and friends that I told I was being physically abused at the dialysis clinic didn’t believe me. Thank God my oldest sister did believe me. She contacted the dialysis advocates and shared my story with them.

I received a call from an angel by the name of Arlene Mullins-Tinker. She listened to my story and she became the second person that believed me. I cried, because I felt I was finally going to be delivered from this torment chamber. Arlene told me not to sign the Behavioral Agreement. She called the CEO of Davita to report the abuse by his staff. Instead of the staff obeying their oath to do no harm, they continued to bully me. One of the techs said aloud in the clinic. “One for all and all for one, if one goes down, we all go down!” The next treatment they clotted my machine so I didn’t get my blood back. Then they removed the needles letting the blood go everywhere. I left that day so weak I barely was able to drive home. Arlene made more calls to the CEO; it wasn’t until Arlene threatened to file battery charges that the abuse stopped. Arlene found another clinic called FMC for me to move so I would be safe. FMC called Davita and they told them I was violent. FMC was willing to still accept me, but my insurance wouldn’t cover me. FMC wanted me to receive treatment but I would be responsible financially for 20% of my treatment. I decided to stay at Davita until I can get Hemo at home.

quickly reversed their actions and in conjunction  with her physician and family, developed a plan to accommodate this patient by continuing home dialysis.  In addition CMS has gotten involved and will be reviewing the actions of Davita. The patient, LL was released from the hospital on yesterday and now is continuing her dialysis at home with her family.  Below is a photograph from several years ago of the patient with Hillary Clinton in regards to Health reform.  Its amazing the fight for health care and patient rights continues. Sincerely, Phyllis Landry and Wanda Rose

had been placed on dialysis he had improved and started to feel better.  He soon suffered a heart attack and had to have emergency Triple bypass surgery.  While in the hospital we had been informed that he has been transferred from his original dialysis facility to Davita Dialysis in Clarkston, Michigan in which he was to report after his release from the hospital.  After going there, he had quickly made friends and felt comfortable there.  This helped tremendously with him emotionally as he has been placed on disability due to the kidney failure and could no longer work.  At 48 years of age, this was a huge blow as he felt he could no longer “take care of his family”.  However, in the past 3 years, we felt we were fighting for good care at his dialysis center, as well as patient dignity.  His Facility administrator appeared to be insensitive to patient needs, had cut back on supplies to save money (patients could overhear conversations of the staff’s frustrations) and appeared standoffish and didn’t really try to associate with the patients.  She questioned patients who had become friends (if they rode together, or went out to lunch together, or whatever, she would question it) nor were they to be “friends” with the staff.  Supplies were dwindling and it was evident that the facility atmosphere had become strained.  On many occasions, he would speak to his doctor and found that only created more friction between himself and the facility administrator.  The latest conflict had been when I walked into the facility to pick Phil up and found him sitting in approximately 2″ of water.  I asked where the water was coming from and why was he left to sit in it while hooked up to electricity.  The tech looked for the source but could not seem to find the cause and then laughed and gestured at how she could be electrocuted while standing in the water, really?  That was when I decided that I needed help.  I love face book and found dialysisadvocates.com on the website. I filled out the patient contact form and waited for a response…not sure if I would get one but I felt that I needed to try.  In the meantime, I had requested a meeting with his Facility administrator.  She took me to the conference room and I just pretty much asked her every question that I could regarding my husband’s care.  Just that week she had changed his dialysis treatment days and time of treatment, in which we felt was in retaliation to him missing treatments due to his IBS/anxiety and neuropathy problems that he suffered…she had previously used the excuse for the change as transportation problems, but this was not true, in fact if anything it had created a transportation problem as I work in the afternoons and since we only have one car I had to find a way to get him home, or I had to be late for work so that I could pick him up from treatment.  How long would my employer put up with that??  Luckily we have a friend who stepped in and would pick him up after his treatments so I could go to work on time.  Some of the concerns I had asked her about were:  did she have any medical training?  She had none nor had she even been a tech, the next question was how would she know if these people were doing their job correctly…would she know if somebody was taking shortcuts during processes? She just told me that she had knowledge of all aspects of dialysis.  I asked her if she was aware that my husband had been left to sit in standing water during a recent treatment…the tubing from his arm to the dialyzer machine as well as the electrical line was in the water, and she had not…yet her response to me was that his machine was connected to a “special plug” behind his machine that would detect any problem, really?  No surge protector is going to protect anybody from electrocution and her answer was unacceptable to me.  I asked her about why incorrect supplies had been used on him and needles put in him backward…she didn’t have an answer.  I asked her about the staph infection that my husband had recently and if it could be related to the other alleged staph infections that patients and suffered recently the same week my husband had his.  I was told that there had been talk of short cuts taken during reuse and this could have been the cause.  In a recent incident, while my husband had been in the hospital, his dialyzer had been used on another patient, why?  Aren’t they supposed to be read by 2 technicians before being attached to the machine for the intended patient? I told her that I wanted my husband on a single use dialyzer from here on out.  She later told me that Phil’s treatment may have to be extended if his counts did not reflect him receiving adequate dialysis.  That was disconcerting to me as I know that my husband’s treatments already were 4 1/2 hours long and this was only his on time…this didn’t include the time needed to be hooked up, unhooked, and then for his sites to stop bleeding.  That following weekend, we had received a call from dialysisadvocates. They spoke to us at length and told us to not to have any further meetings without an advocate, as patients have been known to be retaliated against or discharged altogether.  After many phone conversations and acquiring the needed information for Arlene to adequately represent us.  We made plans of meeting with Davita and Dialysis Advocates via a phone conference.  Davita refused having phone conference with them and said that Arlene of Dialysis Advocates had to be there in person with her driver’s license for them to view.  We signed each and every form Davita wanted to release them of any harm to speak with Arlene about Phil’s health and dialysis care.  Yet, they put up another roadblock for us to be represented.  Arlene assured us that they would not abandon us and that would fly to Michigan to represent us. They met with us, the night prior to the meeting with Davita.  We spoke of our concerns and shared our paperwork/doctors reports/wanted results to come of this meeting.  The next day, when we arrived at Davita, we were met by an armed security guard. Phillip was upset that Davita had done this and felt embarrassed.  We were escorted into the conference room by the guard, but only Arlene, Phil and I were allowed in. The Facility administrator, the Regional Facility administrator, the Medical director (Phillip’s nephrologists), the head nurse, and the social worker were present during the meeting with Phillip, Arlene and I.  The facility administrator read off each of the grievances one at a time.  It was found that Phil was retaliated against regarding his change of time and days of treatment as we produced documentation that Phillip was under a gastroenterlogist care and did indeed have colitis, which actually is worse than IBS and is complicated by anxiety and stress.  Arlene also stated that studies have shown that patients also suffer from PTSD while on dialysis and provided documentation to the nephrologists…and she felt that from her experience Phillip could also suffer from it too.  The dialyzer issue had been addressed and that it was agreed upon that he would continue with correct single use dialyzers for his size and dialysis needs.  It was also asked of whether all patients had this option as we were never prior given a choice.  The doctor said yes, that all patients have a choice.  The incident with the water on the floor while he received his treatment had been addressed and the facility had made steps to have the problem corrected by having the run off sinks behind the patient chairs.  The sinks are now equipped with screens where if the staff dumps bicarbonate into the sink then the strainer would catch the debris before clogging the drain, leaving the run off free to go down in the drain. She did make the mistake of sounding flippant as to the electrocution risk and the regional director and the nephrologists sat stunned.  I made it clear that I would not tolerate any other incidents involving water standing on the floor under him or his machine.  It was unacceptable to me to find him with his lines lying in the water…they understood my concerns and assured us that it would not happen again.  Many concerns were addressed and resolved but the most important to Phil was that he made his voice heard.  He  wanted the social worker and the facility administrator to treat him with dignity and respect…they didn’t realize that when they spoke to the patients regarding sensitive issues, while they were receiving treatment often patients felt trapped and being treated without dignity.  He made it aware that when he observed them waking patients to speak to them, the patients would be startled or frustrated, as he has felt in the past, as well.  The social worker was the first to speak up and say that in all of the 30 years of being a social worker, with the last 2 years involving dialysis, she had no idea that she made the patients feel uncomfortable and genuinely apologized to Phil.  The facility administrator said that it was never her intention to make him or anybody else feel uncomfortable.  It had been agreed that all matters of a sensitive nature will be addressed before the patients are hooked up to dialysis or after they are removed from dialysis.  This was a huge relief for Phillip and I am sure that other patients will welcome this too.  Another matter Dialysis Advocates brought up was that we were being billed from Davita nephrologists even after having dual insurances…BCBS and Medicare…which our monthly bill is $43,000 on average.  She wanted to know why and voiced that we were concerned that Phillip would be discharged for non-payment on our end.  We have several medical bills that we pay and my husband is on 21 different prescriptions, NOT including the medicine they give him at dialysis.  Contrary to popular belief…insurances DO NOT cover everything.  They said for us to bring in our Davita bills and they would take a look to see why this was occurring…the social worker said that she would make sure that she took care of this for us and the nephrologists and the regional administrator were clear that they would not discharge Phil for that reason.  They said that they have never discharged a patient in the history of this faculty and it was not their intention to do this today.  We were relieved as Phillip is not a problem patient; he just wants quality care for the treatment we pay for.  We pay hundreds of dollars in insurance premiums for medical care and we feel he should receive good, safe, and quality care without retaliation, intimidation, or harassment.  Last but not least, Arlene was able to prove that Phillip’s dialysis treatment days and time was changed due to retaliation and intimidation.  His treatment days will be moved back once an opening becomes available.  Everybody agreed that Phil’s care was the utmost concern and Arlene made sure that we were satisfied before we left the meeting.  She met with Phil’s nephrologists privately and felt he was being left in good hands and with a new understanding of what was going on in the facility…Many eyes were opened that day and we feel our relationship with the Davita staff will improve.  I am confident our relationship with the social worker is going to improve as she has reached out to Phil and other patients since the meeting in a positive manner.  The facility administrator has made a better effort to be on the floor to help the staff and learn from the patients. This Wednesday she and her family will be bringing in Thanksgiving dinner for all the patients. I do think that the meeting was good for all intended and a new knowledge and understanding of the patients needs will be actively addressed in the future. Thank you to Bill and Arlene Mullin-Tinker of Dialysis Advocates. We have been truly blessed to have you in our lives and look forward to keeping you informed on the progress that has been made at our facility.

Thank you and sincerely yours,

Lori and Phillip Gallero