A Point of View From a Dialysis Patient

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amazeRN

11 Posts

Specializes in Dialysis, geri,.

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

284 Posts

Specializes in Dialysis (acute & chronic).
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

299 Posts

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

299 Posts

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

299 Posts

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

299 Posts

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

299 Posts

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

11 Posts

Specializes in Dialysis, geri,.
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

299 Posts

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

284 Posts

Specializes in Dialysis (acute & chronic).

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

27 Posts

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.

Trauma Columnist

traumaRUs, MSN, APRN

88 Articles; 21,249 Posts

Specializes in Nephrology, Cardiology, ER, ICU.

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.

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