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 think when nurses are giving a patient diet/lifestyle restrictions, that most of them are not thinking "wow, I'm going to stick it to this person, HOORAY!" I think most nurses are doing what is necessary and want to help. That is what I would assume unless the nurse was just outright condescending (sp) while giving the instructions.

I also think that nurses tend to forget how difficult these lifestyle changes can be and don't understand why their patients don't follow to the "T" the instructions that would save the patient(s)'s life or give them a better quality of life. Some patients don't follow the new rules because their illness has made them lose so much control of their life that they try to hold onto whatever control they can, even if that means doing things that are not in their best interest.

I think this age of litigation has often made patients and health care workers look at each other as enemies and with suspicion. It is too bad when patients forget that health care workers are the people they should work with to be healthy, or when health care workers act in such a way that a patient just feels dumped upon and chastised.

This is just my 2 cents. I have never dealt with kidney disease, nor anyone of my family that I know of. None of my immediate friends either. My father had serious heart disease and may had just as many difficulties and restrictions as any kidney patient. I had a diabetic aunt who would probably still be living if she hadn't, as my husband puts it, "dug her grave with her teeth." Some of these restrictions are HARD and UNFAIR but can save your life or at least help you feel better.

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!!!

No, not bitter, at all. I just know many dialysis patients feel the same way. Those concerns are being addressed, right now.

I can understand where you are coming from. I am both a Nurse AND a Dialysis patient and have experienced and witnessed many of the issues you mentioned. When I am working I on occassion run into patients who do Dialysis and various centers in the area. It both amazes and at the same time doesnt surprise me to hear these same concerns from all of them! When I first started Dialysis in October it was hard enough to wrap my head around what was happening to me (Kidney Failure was unexpected) but what made it worse was the general condescension of some (not all) of the staff I encountered. My biggest peeve in any environment are adults who speak to other adults like they are children. I couldnt figure out if it was because they were used to working with a general demographic (elderly, dementia, nursing home patients). But either way it bugged me and I had to spend a lot of time tuning it out.

On a personal level, it was tough being young and a medical professional going through Dialysis as well. Some nurses upon learning I was also a nurse were immediately on the defensive. I was pretty ignorant about Dialysis (being an orthopaedic nurse) so I would ask alot of questions about settings on the machine and labs, just so I can educate myself. Some nurse would immeiately defend themselves and get pretty rude with me as if I was questioning why they were doing things a certain way. I constantly had to explain I am just trying to learn, NOT question them. Anyway...I give credit to those nurses who treat me with respect and speaks to me as a thinking adult. And those who are just rude and nasty and typically try to stay away from and dont have much to say to them in return. After a few months, I made the choice to do Home Dialysis and LOVE my PD nurse. I hope to stay away from the HD world for as long as possible. If my experiences have done anything, it helps me relate to my patients so much better.

BTW if any of you are interested in a forum where alot of Dialysis patients frequent...check out ihatedialysis.com

Its not as negative as it sounds and There is a wealth of info on there :) It literally helped me as I was beginning this challenging journey.

First, before you give the moral lecture, you should know what you are talking about. that would help. I am on the machine, 6 days per week, 5.5 hours per day, my blood labs are excellent, some of my scores might be better than yours. I do not have any "diet" nor has my nephrologist given me a "diet." 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. What gives you the right to tell the individual how to run their lives???

Moral lecture? Just trying to help with the little facts that were originally given.

It all had to be guess work on what was making you so angry.

I've been warned here since writing that post that help is not what you wanted here.

Guess they were right.

And it's not about thinking we have the "right" to tell people what to do. They

come in for medical ADVICE and that's what we give. If they don't want to hear

it then it's their choice.

Ok, fair enough.

Specializes in Dialysis (acute & chronic).

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!

Specializes in Nephrology, Cardiology, ER, ICU.

Many of my pts come to the HDU via cab, paid for by IL Medicaid.

Specializes in Dialysis (acute & chronic).

At least the dialysis clinics aren't paying for the cab.

Does the IL lottery help pay for this? Our states lottery helps with older adults.

An RN wages for a 5.5 hr treatment, plus 1 hr to set up machine and 1 hr to disinfect machine post would be 7.5 hrs x $40/hr = $300. I don't think the cab trip costs that amount!

Why would an RN have to be at the patients home any way? My patients do home hemo with a "support person" usually a family member - not a RN.

Specializes in Nephrology, Cardiology, ER, ICU.

We have home hemo program called Next Stage that does provide a tech (paid of course) to stick the pt and monitor their hemodialysis at home.

Not sure where the money comes from for the taxis - Medicaid is their payor source.

I go to rural clinics too and there is no transport of any kind - families or pts must drive and some drive 40 miles. And...you know what? They are the most compliant, nicest bunch of people.

Specializes in Dialysis (acute & chronic).

we use Nxstage too, but not with a tech in the home. we teach the patients to self stick, or their support person and we teach them how to run the machine.

I have to TOTALLY agree that the rural patients are more compliant!!!

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

mamabaer, your post was awesome I hope the wrter will look past all that anger and realize what you were trying to say

I think when nurses are giving a patient diet/lifestyle restrictions, that most of them are not thinking "wow, I'm going to stick it to this person, HOORAY!" I think most nurses are doing what is necessary and want to help. That is what I would assume unless the nurse was just outright condescending (sp) while giving the instructions.

I also think that nurses tend to forget how difficult these lifestyle changes can be and don't understand why their patients don't follow to the "T" the instructions that would save the patient(s)'s life or give them a better quality of life. Some patients don't follow the new rules because their illness has made them lose so much control of their life that they try to hold onto whatever control they can, even if that means doing things that are not in their best interest.

I think this age of litigation has often made patients and health care workers look at each other as enemies and with suspicion. It is too bad when patients forget that health care workers are the people they should work with to be healthy, or when health care workers act in such a way that a patient just feels dumped upon and chastised.

This is just my 2 cents. I have never dealt with kidney disease, nor anyone of my family that I know of. None of my immediate friends either. My father had serious heart disease and may had just as many difficulties and restrictions as any kidney patient. I had a diabetic aunt who would probably still be living if she hadn't, as my husband puts it, "dug her grave with her teeth." Some of these restrictions are HARD and UNFAIR but can save your life or at least help you feel better.

If we had Nocturnal dialysis on a large scale, many of these restrictions would not be necessary.

Mark

+ Add a Comment