A Point of View From a Dialysis Patient

Specialties Urology

Published

I have to admit, I have found some of these posts to be interesting. I hear alot of complaining about patients. I have to ask, is this a health care facility or a jail??? Having worked as a police officer, I know that individuals on probation are treated better than dialysis patients. You are very, very lucky, you are making a nice salary with benefits, while most of your patients are on public assistance, who has the better life? I am sure that most of you are married, how many of the people that you serve will have that same chance? You can go where you want and do as you please for the most part, how many of the people you serve have that same outlet? Your kidneys work 168 hours per week, the people you serve are lucky to get 12 hours per week. According to the Cleveland Clinic, the cause of diabetes is unknown. In a December 2006 study at the Mayo Clinic(Lancet) overweight individuals do not have anymore cardiovascular problems than the general population. Individuals that take blood pressure medicine do not live any longer, maybe a few months(Professor Emeritus of Organic Chemistry Joel Kauffman, Ph.D.-MIT) In addition, regardless of health condition, there is only 0.2 percent absolute risk chance of having a heart attack in one year, in other words, statins are worthless.(Former Chief of the New England Journal of Medicine Jerome Kassirer-Nephrologist).

Believe it or not, most of my family is in Nursing. However, I think there is an incredible amount of hypocrisy in the dialysis industry. It is stated that you want patients or consumers to be independent, yet, you do everything possible to prevent that from happening. If we really wanted patients or consumers to be independent, we would use Nocturnal dialysis or otherwise called Expanded treatments, 12 hours is criminal and not enough dialysis. Would you accept that treatment for yourself or your family, I think not. There was a paper put out recently by Fresenius Nephrologists that 4 days per week of dialysis should be the bare minimum of dialysis per week, I would agree. How you would like to be a diabetic and only drink 32ozs of fluid per day??? Think about walking in the desert for days with no water, this is what the dialysis establishment does to these people. It is a stupid and unrealistic policy, not in reality. Do not eat this, do not have that, do not drink even though you feel like you are in the desert, how goofy.

If you have ever watched the show, "Jon and Kate, Plus 8?" Kate was a dialysis Nurse and I noticed she was a very controlling individual. When someone told me that she was in the dialysis industry, I laughed and I was not surprised. I thought police officers had control issues, geez. I am a Home Dialysis Patient and yes, they try to be very, very controlling. What would you do if someone told you how to eat, 24 hours per day? We are not your children, I am not your child. I have a four year college degree and I have been to graduate school. In fact, there is one gentleman at DaVita with a Ph.D. in Physics. Just because we sit in a chair, we are not fools. I have the grades for law school at Stanford or Yale, so you are not better than me. When I become an attorney, I think I will sue dialysis chains that toss patients for no reason. Many times, dialysis chains toss patients that are just advocating for a better modality or care, they dislike patients that are vocal about their health, I know they are a pain in the fanny. No, I do not advocate tolerating verbal abuse or violence, that should never be tolerated. No, I do not like the majority of malpractice attorneys. Yet, I think the way dialysis patients are treated is criminal.

Some day, each and everyone of you will be sick and have an illness, would you want to be treated as you treat your dialysis patients or consumers? Would you want compassion or loud moralizing lectures? How would you feel if you were very thirsty and wanted a drink, felt like you were in the desert, and were told in a condescending fashion that you did not "Need a drink?" I am curious, is that how you would want to live the last days of your lives??? I have to say that I would not treat anyone of you as I have been treated, that is why I left In-Center dialysis.

I have loved many Nurses dearly in my life and had a great respect for the Nursing profession. However, in this field, my respect level has decreased to seeing some more like parole officers than Nurses. I think this is a industry that is really in serious need of reform. The day of change will come when we have freedom in the health care system, without government control freaks. This will give dialysis patients the power to fire loud and controlling dialysis personnel. I have to confess, I have never in 43 years met so many arrogant and controlling individuals in my life, who believe the attitude of blaming the patient, first.

I am an RN, although not a dialysis nurse. My husband is a dialysis patient. The unit he goes to was taken over by DaVita about 2 yrs ago. The nurses, techs and even the unit secretary are caring wonderful people overall. There are times when they do or say things that my husband doesn't like, usually that is resolved. My husband has had a myriad of medical problems and the staff have been supportive....some policies changed when DaVita took over....some good, some bad...We are all dealt our lot in life and we only go this way once, having a positive attitude as both a patient and a nurse can do a whole lot to make life liveable. People are not always going to follow directions, as patients you can do what you choose as long as you recognize that their may be consequences that you will need to deal with.....I work in the field of Addictions, many of my patients/clients do NOT follow directions. As a family member I often feel very alone in dealing with a chronically ill individual, the staff at the dialysis unit have always been helpful. If he is having a particular problem, they will listen to me and keep me posted on his status, if necessary....I am so thankful for the dialysis nurses at my husband's facility............Thanks to all dialysis nurses....Happy Nurses Week!!!

Good to hear.

Mark

Originally Posted by NDXUFan

"I am trained as an Economist, so I know a fair amount about benefits and fiscal policy. Nocturnal dialysis IS cost effective, which would greatly reduce costs to the American taxpayer. For example, it is cheaper for an RN to do dialysis in the home for a patient 6 days per week, than it is drive that individual by taxi to a dialysis center 6 days per week."

I don't know where you would come up with this information, because I know that it is not cheaper to send an RN to a patients home 6 times a week than sending a cab for the patient to come to a clinic.....The RN wages are more than a taxi trip - plus, what clinic sends taxis for their patients??? (This is against federal laws!)

Our patients come by transportation that is provided for elderly/disabled people and it cost them a few dollars for this trip - sometimes only a dollar!! or they WALK or catch the BUS!

In my In-center experience, most of the patients come by some type of medical transport. The vast majority of these individuals are too sick to walk, a few do take the bus. If they are able to obtain transport for a few bucks, more power to them, that is great.

Mark

You know I read your testimony and can literally feel your anger and frustration. I have worked in dialysis for about 11 yrs and I have seen dialysis patients get mistreated but on the flip side I know many nurses who go out of their way to try to appease the patients. when I read your post it is almost like you blame your condition on the workers and everyone involved, we all have to take responsibility for what is happening in our lives and while I do empathize with your plight, restricting diet and fluid may be harsh but is the best demonstrated practice for optimal health. trying PD might be a better avenue because your diet is not as restrictive and you dialyze every day, you may also want to look into talking to someone about your misplaced anger, many patients that I have encountered feel like they have lost control because they are tied to a unit or facility three days a week for hours and even though I can't possibly know what you are going through it is not fair to blame others for your misfortune. We are truly here to help

Once again, most of my post is just repeating what I have heard or what has been said to me by other individuals. The cause of diabetes, again, is unknown per The Cleveland Clinic. Per the Mayo Clinic, Overweight Individuals are not more likely to have Cardiovascular Disease(Lancet Dec 2006). Diet and Fluid restrictions are unnecessary with the correct dose of dialysis. I know and realize, you are here to help, yet, sometimes, "help" comes across as a control issue or a military boot camp. This might help you.

http://www.nocturnaldialysis.org/

Professor of Nephrology John Agar and Director of

Department of Renal Medicine, The Geelong Hospital- Australia

Australia:

"Thirst is a powerful, primitive, primal survival mechanism

Thirst simply cannot be resisted - no matter how much the patient tries.

The inevitable result ...?

Another 4 kg (4 litres) is gained and ... it all starts over again."

http://www.nocturnaldialysis.org/about_us.htm

Specializes in Nephrology, Cardiology, ER, ICU.

Where I live (IL) most of my 250 pts are ambulatory, our state is broke as is our Medicaid system, some take taxis (the ones that live in the city), there is an equally broken wheelchair van system that brings a few more. The vast majority of my pts are people that drive themselves and/or their families bring them.

The rural clinics have NO transportation available: the families/pts themselves drive.

I am not bitter, many on dialysis are unable to verbalize their feelings. I challenge you to show me where I am wrong.

First, of all, BIG BOY, I do not have any mental health issues. Second, I have not sued any medical providers. Third, the truth does hurt, does it not? The problem has been and will be that not enough dialysis is being given for these folks to have a productive life, is that their fault?

Specializes in Nephrology, Cardiology, ER, ICU.

NDXUfan - can you clarify who you are addressing? I certainly wasn't insinuating that you had "mental health issues."

I am a dialysis nurse and absolutely agree with your post. We (as dialysis nurses) are in the setting to help, not control. One can not stop living just due to a disease process. I thank you for writing this if it even makes one staff member stop and think.

I have worked in 3 different settings of healthcare system on dialysis. My first dialysis experience was in the developing country with a poor healthcare system, the service will be provided when the patients have bought or paid the equipments or the meds only. We had to reuse the kidneys, the patients try to be as strict as they could so they could come twice weekly for dialysis. Terrible situation, we tried to get help from the insured patients to get some equipments for the uninsured. After a year, I worked in a middle east country, an oil filthy rich country, where all the healthcare is free. They don't have to pay for anything at all. The patients are incompliant at all, thinking that anything they eat/drink will be removed by dialysis. Most of the doctors and nurses are non citizens, the system overweight the patients' demand. They had to open a big 24 hours dialysis center, to meet the need of daily dialysis incompliant patient, all around the clock. Patients drink and eat during the treatment. Yes, they do in there. The dialysis treatment room looks like a real tea/coffee parties. They bring their own maids to assist with the food and drink. Each room has their own ice maker machines, they eat as much ice they could during dialysis. The new nurses who don't know the no restriction rules end up yelled, spit, cursed by the patients when they tried to enforce the diet and fluid restriction. Really low survival years on dialysis for 'the tea/coffee party members.'I am now working in acute setting of dialysis in US healthcare system where I see the non compliance patients/the frequent fliers. With Creatinine 15.5 and Potassium 9.2 (yes, still alive and alert enough to fight for the soda) and 10kg higher than the dry weight, do you expect the nurse will let you eat/drink whatever you want? IT IS OUR RESPONSIBILITIES to help you understand the restrictions you have to follow to prolong your life. Whenever you come in with the bigger labs and scale, we will assume you don't follow the rules and you will have to hear the annoying restrictions on your diet and fluid over and over again. Many home dialysis patients in my area end up intubated in ER/ICU within a year. When they survive, we find ridiculous reasons how they came to the ER: I stop my machine because it makes loud noise, I tried to remove more fluid because I ate alot, my husband is gone for deer hunting. At least you have options in here to stay alive, other dialysis patients in other part of the world has to struggle for their payments on each treatment. If you don't want to hear your nurse nagging about your diet, tell you don't want to hear anymore health teaching you have already known, the nurse will write it on her chart. The nurse who don't even try to remind you about your renal dialysis diet when your lab and weight are high are not capable to be the dialysis nurse at all. At the end, it is all about your choice how you want to live your life.

Provide Nocturnal dialysis and it will not be a issue.

I drink alot and I have been on dialysis for 6 years and I have never been in the hospital for a dialysis related issue.

+ Add a Comment