A Point of View From a Dialysis Patient

[NDXUFan]

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.

[amazeRN]

kudos to mamabaer439:) I work in-center hemo and I see the same patients every other day and they have become my extended family. I work for them, I teach for them. I want them to live full healthy lives for as long as they can. I try and put mysef in their situation to have to live by so many rules and restrictions but it is hard, very hard. If you dont understand something ask, and if your still not sure ask again. Here is something I thought about once I became a dialysis nurse only a few short months ago: patients w/ BP probs take BP meds and watch their diets, diabetics need insulin/watch their diet, ppl w/ GI disorders learn what they can/can't have bc it upset their system, ppl w/ thyroid issues take meds/watch their diet etc. For dialysis pts they have to do EVERYTHING...watch their diet/ monitor fluid/ take meds plus (if hemo pts) come in for tx 3x/week for 3-5 hours, every week until forever, unless candidates for transplant. ESRD is a very very sad disease and I wish I could fix every single one of my pts, but I can't. What I can do is make sure they are doing the best they can with their fluid/diet and re-educate when needed.

[Tish88]

I wanted to add that Kate Gosselin was an L&D RN, not a dialysis nurse. When she worked L&D that was what prompted her to do infertility treatment when she couldn't get pregnant the second time.

http://en.wikipedia.org/wiki/Kate_Gosselin

In the first episode of Jon & Kate plus 8, Kate Gosselin did reveal that she was a dialysis nurse and she worked on Saturdays at a dialysis clinic close to her home. I heard her say this myself.

[NDXUFan]

I'm sorry you are so bitter. Have you taken your concerns to your dialysis unit/company and on up the chain of command?

Yes, I did and it was ignored, I know, shocking.

[NDXUFan]

To the OP: This is a site for nurses. Anytime you have a stressful job and I'm sure you did as a police officer, you have to have a relief valve. I've worked with some fantastic people in my life in many walks of life and many become jaded behind closed doors.

I understand how you do feel, but, I am not a punching bag and neither are you. The other day one of the patients in In-Center was rude to the Nurse. I am going there for my buttonholes. The Nursing staff there is very kind. I told him in no uncertain terms that I did not appreciate his comments.

[NDXUFan]

kudos to mamabaer439:) I work in-center hemo and I see the same patients every other day and they have become my extended family. I work for them, I teach for them. I want them to live full healthy lives for as long as they can. I try and put mysef in their situation to have to live by so many rules and restrictions but it is hard, very hard. If you dont understand something ask, and if your still not sure ask again. Here is something I thought about once I became a dialysis nurse only a few short months ago: patients w/ BP probs take BP meds and watch their diets, diabetics need insulin/watch their diet, ppl w/ GI disorders learn what they can/can't have bc it upset their system, ppl w/ thyroid issues take meds/watch their diet etc. For dialysis pts they have to do EVERYTHING...watch their diet/ monitor fluid/ take meds plus (if hemo pts) come in for tx 3x/week for 3-5 hours, every week until forever, unless candidates for transplant. ESRD is a very very sad disease and I wish I could fix every single one of my pts, but I can't. What I can do is make sure they are doing the best they can with their fluid/diet and re-educate when needed.

I would love to have you as my Nurse. :) One of the issues with BP meds for me is if I take them before a treatment, by the time, the treatment is over, I will feel like passing out. With Kate Plus 8, I did not really want to make fun of Nurses, I just thought she was crazy, regardless of the field. I cough alot, because I have had very bad allergies for 30 years, including asthma. I am taking steroids right now, along with a breathing machine. However, most of the year, I am fine, except for Fall and Spring, awful.

[NDXUFan]

This poster is well known in dialysis circles. He has been a very outspoken advocate for pts. However it is important to realize that this is a site for nurses and though we welcome pts input it's important to understand that nurses feel comfortable here and vent. This is not necessarily the way we talk to pur pts.

LOLOLOL, I am well known, I guess it is good to be well known for my viewpoint. :) I have to admit, I did laugh when I read this post. Everyone needs a site to vent certain feelings, that is good and healthy. I do not take anything said here personally. Yes, I am very honest, sometimes, I am very loud and outspoken, but that is only to people who do not or will not have a reasonable discussion. At least, I do not talk behind your back. I feel as if I have to speak out for the vast majority of these people who are unable to speak for themselves. By the way, the person who taught me to be that way, was my mom, who was a Psych RN. :)

[NDXUFan]

I'm not a dialysis nurse, but have had someone with ESRD in my life.

Anyway, I'm wondering if you've had proper education on your condition. It doesn't seem like you have because you would know that in your case fluid and certain diet restrictions are for your benefit. It sounds like you want to dialyzes at home nightly. Is this right? If so, is it because you think this will allow you to consume everything that goes against your current diet plan? I'm not sure that will work because I don't know anyone that dialyzes nightly.

Have you discussed this with one of your nurses? I'm guessing you have and they told you it was not cost effective or something like that or they insinuated it was not covered by your health benefits or something, because you seemed really bitter when discussing benefits in your post. I'm just trying to figure out what could have happened to make you write such a post. You said you weren't bitter, but it most certainly came across that way.

If you insist on having extra water and your dialysis nurse tells you no, it's because your self control in that area is lacking (understandably so, because when you are thirsty it's hard not to drink), and they have to insist that you not drink because it's not in the best interest of your health. Just like you would not let a child drink poison if they had it in their hand. To your body these things one would normally consume i.e. sodium, potassium, excessive fluids, are like poison. The nurses are there to protect you from putting things into your body that could speed up your disease process. Some patients just don't want to hear that though. They think that the nurse is just being a b**** when in fact it is their JOB to treat, teach, and show strength and control when ever the patient is lacking in control. That is what they are there for... that is what they are being paid for...to step in and stop you from hurting yourself. Yes, they are being very controlling because some people on dialysis are very "lax" about their condition and either don't care that they are SERIOUSLY harming their bodies by what they put in their mouths, or they just don't believe that one bottle of soda or one bag of potato chips is going to do any damage.

If however, patients are aware of their restrictions and the reasons for them and are choosing to be non-compliant no matter how it affects their health... I wonder why they even bother going to dialysis? Having your blood dialyzed is only ONE part of the treatment. Sitting in that chair doesn't magically fix everything that someone has done to themselves over the course of a day or two.. it just helps. What you put into your body is a huge huge part of it.

Someone who has high cholesterol and won't stop shoveling bacon into their mouth may think they'll be fine, when in fact a heart attack is right around the corner. Some may even become belligerent when the doctor or nurses have to re-educate them about their diet after their labs come back ridiculously high even though they are the ones who ate bacon for breakfast all week. Again, I wonder why they would even go to see a doctor and pay for his advice when they have no intentions of following it. Could be that they are not handling the reality of their condition very well? .. a little denial coupled with displacement of anger towards caregivers. Perhaps their caregivers where not sympathetic enough while explaining the importance of their restrictions and just barked orders. Some nursed don't give information properly and some patients just don't want the information. It's hard I'm sure for someone to deal with a change of lifestyle that is so drastic due to a life threatening condition. Speaking with a therapist may be helpful. I know I would speak with one. Cancer runs heavily in both sides of my family, so I'm sure I'll be dealing with it someday, but for right now, I'm a long term care nurse who does what she can for her patients even if it means being stern with those I care for to help improve their health and well being because as a nurse that's what I'm supposed to do. To ignore non-compliance would be neglectful of my patients.

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??? The absolute risk for any individual to have a heart attack in any one year, regardless of health condition is 0.2 percent absolute risk(Professor Emeritus Joel Kauffman, Organic Chemistry, M.I.T.) 14 drug patents, 100 peer reviewed publications.

Jerome Kassirer, Former Head Editor of the New England Journal of Medicine, Nephrologist:

Uffe Ravnskov, M.D. Neprhology and Ph.D. Clinical Chemistry:

"A reduction of animal fat and an increase of vegetable fat in the diet is said to lower the blood cholesterol. This is correct, but the effect of such dietary changes is very small. Ramsay and Jackson (37) reviewed 16 trials using diet as intervention. They concluded that the so-called step-I diet, which is similar to the dietary advices that are given nationwise by the health authorities in many countries, lower the serum cholesterol by 0 to 4% only. There are more effective diets, but they are unpalatable to most People.

Studies of African tribes have shown that intakes of enormous amounts of animal fat not necessarily raises blood cholesterol; on the contrary it may be very low. Samburu people, for instance, eat about a pound of meat and drink almost two gallons of raw milk each day during most of the year. Milk from the African Zebu cattle is much fatter than cow's milk, which means that the Samburus consume more than twice the amount of animal fat than the average American, and yet their cholesterol is much lower, about 170 mg/dl (38).

According to the view of the Masai people in Kenya, vegetables and fibers are food for cows. They themselves drink half a gallon of Zebu milk each day and their parties are sheer orgies of meat. On such occasions several pounds of meat per person is not unusual. In spite of that the cholesterol of the Masai tribesmen is among the lowest ever measured in the world, about fifty percent of the value of the average American (39).

Shepherds in Somalia eat almost nothing but milk from their camels. About a gallon and a half a day is normal, which amounts to almost one pound of butter fat, because camel's milk is much fatter than cow's milk. But although more than sixty percent of their energy consumption comes from animal fat, their mean cholesterol is only about 150 mg/dl, far lower than in most Western people (40)."

[amazeRN]

I understand how you do feel, but, I am not a punching bag and neither are you. The other day one of the patients in In-Center was rude to the Nurse. I am going there for my buttonholes. The Nursing staff there is very kind. I told him in no uncertain terms that I did not appreciate his comments.

Interesting. I work in a small unit and have not worked with buttonholes. Care to share what you like/dislike about them?

[NDXUFan]

Interesting. I work in a small unit and have not worked with buttonholes. Care to share what you like/dislike about them?

I like buttonholes because they are easy to stick with dull needles. However, my surgeon of 40 years of experience(University of Cincinnati) is not crazy about buttonholes, he thinks the needle sites should be moved around. He is considered one of the best in the metro area, has done kidney transplants, also, for 40 years. I love fistulas.

Mark

[Tish88]

Another thing about buttonholes to consider is a patient should have at least 1 back up buttonhole or another complete set that is rotated with each treatment.

A back up buttonhole is needed in case there is problem with one of the sites; this allows dialysis to be completed using the other hole.

I love buttonholes and they are good for fistulas if they are created correctly and cleaned properly prior to dialysis to prevent infections.

[Neptuneschyld]

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.

[traumaRUs, MSN, APRN]

I think we have to realize that we are viewing this from two directions: that of pt and nurse. While our roles interact, we each do have different sets of values that come into play.

So, I don't think anyone meant any offense, its just a difference of opinion and we can all realize that as adults, we may have that once in awhile.