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.

[traumaRUs, MSN, APRN]

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

[traumaRUs, MSN, APRN]

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

[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?

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

[caregiver1977]

What you describe could be said of any part of patient care. Mine happened to be labor and delivery. It is bad in my area because there is only one main hospital in about a 40 mile radius, so they think they can pretty much treat people as they wish and still get plenty of customers. Change around your story a bit, and it could be mine.

I haven't posted my horror stories on this site because it is mainly a site to help nurses and those who want to become nurses. I would love to start a thread called "What I Really Wanted to Tell That Nurse" but I didn't think that would be helpful (or maybe it would be).

But according to what you have posted, you have legitimate concerns, certainly.

[traumaRUs, MSN, APRN]

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.

[rnbob]

There are medications that may be of use to you.

Talk to your PCP, in fact you might want to show him your post, that is unless you already sued him.

[mamabaer439]

WOW. I am sorry you feel so picked on. I am sorry your kidneys don't work. That sucks, and it really is an awful way to live. I get that. But for every disease process there are things that people need to do to maximize their life expectancy. Heart patients, need to eat a healthy low fat diet, diabetics have to avoid carbs and take their insulin, everyone needs to take their prescribed medications in their prescribed way. It just so happens that you have a condition that means you need to adhere to a stricter diet and fluid restrictions. It is unfortunate, but it is your reality.

Fluid restrictions are not some arbitrary way for us to hold you in our power. They are a necessary evil to protect you and your heart, so that you can live a longer life. When you drink too much fluid and are a dialysis patient there are repercussions. Excess fluid puts a strain on your heart and over time, can shorten your life. Large amounts of fluid are hard to pull and can cause you discomfort (cramping, low blood pressure) during your treatment. I don't want these things to happen to you, so I tell you not to drink. God knows, I would love to let you have all the fluid in the world, but it is not in your best interest. So do not complain if I tell you that you shouldn't have it. I am doing my job, trying to teach you the best way to care for yourself. You can choose to ignore me. Fine. That is your choice. Just know that by doing so you are shortening your life.

The diet that has been recommended for you is also not some arbitrary way for us to exert our control. It is not in your best interest to eat high potassium or high phosphorous foods. Sorry about that, it sucks. Life dealt you an unfair deal, now you need to decide if you want to follow our recommendations, or throw it all out, and live your life the way you want to. Go ahead, but again, know that by doing so you are shortening your life.

You seem to think that we like enforcing these "rules"; that we get some sort of maniacal kick out of making your life miserable. We don't. We know that what you are facing is difficult, and not fair; no one deserves to have to live like this. But the fact of the matter is that kidney disease is your life, you didn't choose it. But you do get to choose how you want to deal with it. Instead of tearing apart your caregivers, how about looking at it from their perspective. They have a job to do. That is to help you live a full and productive life with the diagnosis of End Stage Renal Disease. To do so we will work with you as long as you work with us. Problem solve with your nurses to find alternate strategies to slake your thirst. Rebel, fight, ignore if you please, but do so at your own peril. Follow their recommendations and extend your lifespan. Your choice.

I am glad you have found a modality that works best for you. There are options out there for every dialysis patient. You are right that nocturnal is best. Most people that I have worked with, even when it is explained to them that it is the best option, choose not to take that option. They have choices, the choices are made available to them. They choose. They are not forced into a 3 day, 12 hour dialysis schedule. They can choose the better nocturnal schedule. But they don't.

I hope that someday you will realize that we are not heartless creatures put on this earth to make you miserable, but rather, caregivers that care and only want what is in your best interest for you. God bless you and I hope you do live a long, full and productive life with this terrible disease. It can be done.

[TXRN2]

wow- i, too, am sorry that your kidneys don't work & you are a dialysis patient. i am also sorry that you are indeed so bitter & angry- this is not good for you! it is very unfair for you to judge & label all dialysis nurses as you have. in any health care field, you will have some nurses that are outstanding, some that have lesser skills, & those in between. personally, i treat my dialysis patients as i would like for my family member to be treated, if they were a dialysis patient. i treat them with compassion, kindness, & respect. & if they show that they need some education about their disease- i provide that, in a compassionate manner.

[talaxandra]

mamabaer's explained the rationale behind dietary and fluid recommenations for people with ESRD, something I'm surprised hasn't been explained to the OP before.

I'm not sure what the OP's point about marriage, diabetes, statins etc was, so I won't address it. What I will say is that, over my career I've managed to transition from feeling responsible for my patient's behaviours to caring about my patients' wellbeing, but not more than they do.

So if, after having the reasons why restricting fluids etc are in their long-term best interests, my patients choose to drink litres, eat foods high in phosphate and/or potassium and/or sodium, or skip dialysis sessions then that's their choice. Same with my patients who have diabetes but chose not to follow the research-directed recommendations for optimal glycaemic control, or people with HIV deciding against ARV's. The patient's the one with the disease, not me.

That said, seeing literally hundreds of people having poorer health outcomes, shorter lives, unnecessary months in hospital and significantly more frequent admissions than they could otherwise can be is really frustrating when it runs counter to the whole point of my industry. Choosing between one's short term desires and long term interests is always hard, as anyone who's made a new year's resolution knows. Knowing the illness trajectory because I've seen it many times before is hard, and trying to change it may be part of why, despite my belief that competent people get to make their own informed decisions, I sometimes repeat information my patients already know.

[Neptuneschyld]

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

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.

[traumaRUs, MSN, APRN]

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.