I do extended treatments now but even when I was doing shorter treatments like 3 hours, I still never considered it horrible. I used that time to get a lot of things done on the computer, or help my son with his homework, or simply relax part of the time and watch tv. It was just part of my day like any job would be. I always did feel bad for the people in-center who would work 8-10 hours days and then have to spend the next 4 hours in the center away from family. I really should go back there and talk to them about home dialysis. I actually feel guilty because I haven’t.
May I ask which machine you use? Thanks!
I have been following this thread and my impression, Moosemom, is that you are angry and frustrated. Unfortunately ESRD is a lifelong affliction that requires patience, persistence, a sense of humor and a lot of self care. I have been using the NxStage machine for six+ years now, and I am waiting, like you, for FDA approval so that I can do extended nocturnal treatments. Your reaction to your situation is a little extreme… and not including proper information on your flow sheets will affect the trust from the people who are treating you, but it also affects home hemo patients in the US. I agree that things are not perfect, but when my transplant failed in 2004, Davita went out of their way to start-up a home program for me, and at my request, got me the NxStage machine. I was the first patient in Washington state to dialyze at home on that machine. There have been so many changes for the better since I first had to go on dialysis in 1996. Take a deep breath, be grateful that you have the opportunity to dialyze on that machine - it could be a lot worse. I wish you well.
Jwalkc
Thank you Jwalkc for your comments. There is an inherent danger is labelling someone “extreme” when you do not know their life situation.
I have never advocated falsifying data on a flow sheet. I am the most compliant patient on the face of this planet. I have kept my lab results since 2004, complete with charts and graphs, so inserting dodgy numbers frankly would not occur to me.
I have had CKD for 20 years, spanning 2 decades and 2 continents. I have gone through the hoops to get on the transplant list. I have educated myself to the very best of my ability, and I don’t know how much more self-care I can exhibit than that. I have an inordinate amount of patience as long as I know that I have a team working with me and not against me. I am nothing if not persistent.
I watched my mother die on dialysis. ICHD damaged her heart. Toward the end of her life, her left leg was bigger than the rest of her put together. Her Davita clinic set up a nocturnal unit and brought in someone especially to develop it. He asked my mother to think about it…she was actually offered a choice for a better modality…but the clinic administrator refused and never gave her a reason why. I am convinced that gentler dialysis would have given her heart a better chance to function well.
I am pleased that you have a clinic that is amenable to you. I have already spoken to my clinic, and they are willing to train me on NxStage when it comes time for me to start dialysis. So you and I are well set. But how about everyone else? Is everyone lucky enough to have the kind of clinic you have? Is everyone even AWARE that NxStage exists? It doesn’t stop at your front door. There are MANY ESRD patients out there who are stuck in a system that is all fine and dandy for the clinic set up but do not have access to all of the information required to give the informed consent that should be at least morally necessary.
Are you sure that your post is directed to the right person? I do get angry and frustrated at the state of dialysis in this country, but I certainly would not define that as “extreme”. It was the original poster who spoke of falsifying data on a flow sheet…
Moosemom,
Please accept my apologies, you are correct, I was directing my post to the person who started the thread and I realize now that it was not you.
Forgive my error.
jwalkc
No need to apologize because you’ve reminded me that things ARE better than they were in 1996 and that in 2011, while things are not perfect, progress HAS been made and will continue to be made. Thank you for reminding me that there is a lot that I should be grateful for; I will be the first to admit that sometimes I lose sight of that.
Who knows…maybe it will be next week when we get that approval from the FDA! We live in hope (better than being dead without hope!).
Take care,
MM
[QUOTE=MooseMom;20820]I probably don’t really have to say this, but, well, I will. Dori and Beth, I am so very grateful for the work that you do on the behalf of patients, and I truly do not mean to be condescending, but I am not sure it is possible for you to imagine how frustrating it is to have your life in the hands of people you do not trust and to know that you are not getting the best treatment for your deadly, incurable disease because your clinic doesn’t “offer” it. You have a disease you did not ask for, and you are having to subject yourself to a treatment that keeps you alive yet can still slowly kill you, yet the best treatment is not available because you just happen to live in the wrong zipcode or some executive you’ll never meet decides that making money off your misfortune is a better result than you getting optimal dialysis. Your body is being assaulted for no reason other than the staff can’t be arsed. Can you close your eyes and imagine how truly terrifying that is?
We keep being told that we need to be our best advocates, that we need to empower ourselves and take control of our treatments and our health. On a wider scale, all around us we are seeing public services being slashed and disadvantaged people being swept under the rug, all in the name of “personal responsibility”, yet when we patients try to self-advocate, empower ourselves, take control and exercise “personal responsibility”, we’re really being told that we cannot possibly be trusted and must be nannied into submission. It can be the most frustrating, dehumanizing experience. If you get great staff, you are blessed, but if just ONE tech or nurse or SW or manager makes life difficult for you, you are so totally toast.
In an ideal world, dialysis clinics would be havens of pleasure, but everyone is stressed. The staff get to go home at night and eat their baked potatoes and swig their cola and have chocolate ice cream for dessert and forget about kidneys for a while, but we patients can’t do that. Please don’t expect us to always be grateful for the life-saving treatment we are getting because dialysis is horrible and frightening and it sears your very soul.
NDXUFan, I really do hope that you can get things worked out and that you can find a clinic who will be merciful and will kindly offer you optimal treatment. It is not for me to ask, but I will anyway…please do try to be patient if at all possible. Life is hard enough without having to fight people, so please try not to create a battlefield. Hopefully we will hear from NxStage and the FDA soon about approval of NHD. I wish you all the luck in the world.[/QUOTE]
4 1/2 years of waiting is unreasonable, they need to keep their promises.
[QUOTE=Wendy Ramsay;20845]I don’t think dialysis is “horrible” at all. I am grateful that I had a choice to choose it and stay alive for my then 8-yr-old son. The other choice would have been death. I dialyze while I sleep. I have my whole day. I just got back from the gym. Too see me, you’d never know I was “on dialysis”. I LIVE my life because of dialysis. It’s not painful. I don’t find it unpleasant. It affects my life in a positive way. I don’t like the look of a fistula but I’m used to that and the ones who love me don’t even notice it any more. There is nothing ‘horrible’ about it for me. I suppose if I started to have all sorts of problems related to dialysis, then I might have a different opinion. If I was still in-center there would certainly be more negative aspects to it. I hated being in center but never thought the dialysis was horrible - I thought the environment was horrible plus the fact that I wanted MORE dialysis than I got there.
Anyway, just a different perspective.
By the way, one of the FIRST REQUIREMENTS of home dialysis is PATIENT COMPLIANCE. If a patient is incapable OR unwilling to be compliant, they don’t qualifiy for home dialysis.[/QUOTE]
It sounds more like jail than a medical treatment, who died and left them as boss?
The trust of the clinic, hmmmm, what about the trust of the patient for the clinic to do what is best for their health??? Let us be honest, Nocturnal dialysis or Extended treatments are best for the health of the person on dialysis, to give anything less, is neglect. You fail to realize, we need and deserve what is best for our health, not to suit the laziness of the provider. Do you really believe what we deserve less than what is best for us??? The provider needs to realize that if they do not serve our needs, there will be repercussions. I am not your child and you are not a jailer. In the mid-late 70’s, most dialysis consumers worked for a living, earning their own income, thus creating independence. The current dialysis system is one of dependence and paternalism, “We need know what is best for you.” If that is true, why do the stats tell another story? They claim that they want people to get a transplant, yet create every barrier under the sun to get a transplant. They state that kidneys should not be sold, yet, again, they are the ones making a small fortune off of transplants. They call other people, “greedy” yet, they are the first ones sticking their hands out. Everyone else should do it out of the kindness of their heart, yet, we should make a small fortune. Kidney transplants are much cheaper than dialysis, it is not even close. They would be singing a vastly different tune if they were in the kidney failure boat. The provider acts as if we should just be grateful that we are living, that we only deserve what is given to us, quite frankly, they would never accept this poor level of care for themselves. Me earing their trust??? I am the customer, you need to earn MY trust and give me the best care available or I will take my business, somewhere else that will, basic Economics 101. Again, who is the customer here???
I am not holding my breath.
That administrator should have been taken to court and sued.
Short and daily treatments might be good for you, but, for others, it is not. I am basing this on medical information I was given. Please do not make medical decisions on a case you have absolutely no knowledge of or will in the near future. I do not know anything about your medical situation and you do not know anything about mine. If you want your provider to be a jailer, that is fine with me, go for it. I refuse to live that way. If that treatment works for you, fine. However, it does not work for me.
I am a home dialysis nurse and we offer nocturnal on nxstage, however, I would not want this patient as one of mine. I honestly think some people think that they can just say anything to us and we are just supposed to take it. Yet when a health care worker, who is also HUMAN, responds back to them the way they are dishing it out to them, they want to act as if some major injustice has taken place. We all want to be treated with dignity and respect. It is okay to disagree but that doesn’t mean we have to be ugly to each other. I always try to treat people the way I want to be treated because verbal abuse is wrong no matter who the offender is. I have witnessed patients being verbally abusive and insulting to the staff and act like that is what we are there for. There is only so much a person can take…some more than others.
I am also a patient with a chronic illness but that doesnt give me the right to act like I own my MD and nurses. We work together even when we disagree. I have had to change care teams more than once, however, I have never been condescending or rude to any of my MD’s or nurses. I have been straight foward and direct but never rude. When you become infuriated because someone doesnt respond the way you think they should, then you are the one giving them that control over you. If you have anger issues, then deal with them but dont take it out on the people who are try to help you.
I never stated or applied that I would say or do anything to someone who works in dialysis. Most of the time in my experience, it is the dialysis staff that is arrogant and rude. I love and respect the Home Dialysis staff at Indiana University. The staff at Indiana University treat the individuals on dialysis with great respect and care. I would recommend the staff at Indiana University Home Dialysis to any individual on Home Dialysis. You are incorrect, I am the person who decides what treatment and medications that I will accept, not any other individual, the final decision is mine and mine alone. Respect is earned, not assumed. Dr. Kraus lives, eats, and sleeps kidneys and dialysis, that is why I respect his orders. I can work with anyone, we do not have to agree, if we agree, that is a bonus. However, I do have to agree with someone to work with them. If I would have had to agree with everyone as a police officer, I would not have completed many tasks, if any. My mom was a Psych RN and my mom would have never tolerated some of the superior attitudes that I have found in dialysis, nor would my RN sister or RN aunt. I would never let someone be nasty to the nursing staff at IU. I would have to shove my old nightstick(PR-24) up their rear end. Not sure why some of you think I am always angry??? If you want to talk to someone with an angry attitude, you should speak to the DaVita manager who screamed like a manic at me over the phone because I did not have the gas money at the time, to travel an hour and half every day for fistula training. These are some of the attitudes in dialysis that are in serious need of a change.
It is unfortunate and down right unacceptable for nursing staff (including managers) to yell and berade patients. I personally have never yelled at a paitent but I know a few nurses/techs who have done so. In some cases I understand why they did (I didnt say I agreed with them, but I understand why they did it). I dont think the paitients really understand everything those dialysis staff have to do and put up with on a daily basis. I have heard and seen some really mean and hurtful things being directed toward the staff where I work. Not all clinics are the same but there are injustices on both sides of the fence. I actually had the pleasure of working with a dialysis patient who became a dialysis tech and then a nurse. This person was one of the best professionals in the dialysis field that I have ever worked with. She not only saw things from the patients point of view but she learned just how one sided her view was as a patient. All I’m saying is all dialysis workers are not the enemy and most of them are overworked and underpaid for the amount of work they do. They have already been working before the first patient steps into the unit and they work HARD all day and some actually continue to work after the last patient has left. Remember you are not the only “personality” they are dealing with. Why do you think there is such a high turnover in dialysis? It can be greuling, back breaking and emotianally draining. There are the patients who no matter what you do they are never satisfied, nothing is ever right or good enough. Then you have the doctors who belittle or degrade you. Then you have to deal with the managers breathing down your neck about what wasnt done or what needs to be done. We dont become dialysis workers so that we can make the patients lives worse. Most of us really want to help and make a difference in the lives of our patients. It doesnt make us feel any better whey you are not getting the best care possible.