I have been unable to prime 6 NxStage Pure Paks. These individuals have put me thru the same tests, over and over, without fixing the problem. I received equipment to fix the problem, yet, the 6th Pure Pak in a row failed. I informed the clinic if the problem was not fixed, the services of NxStage would be terminated. Either they will pay a few hundred dollars for someone to fix the problem or they will lose thousands upon thousands of dollars from a private insurance patient. In the real world, this type of dismal performance would not be tolerated. I would encourage my fellow dialysis patients to follow suit.
What exactly are the issues you are having…
MM
[QUOTE=MiracleMan;18293]What exactly are the issues you are having…
MM[/QUOTE]
Alarm A51 Output Pressure High, everything about the drain line has been replaced.
Mark, I’ve never heard of such a problem from anybody in the NxStageUsers group. I’m assuming you followed all of the instructions from the PF manual and that you’ve changed out the control unit. Have you changed out the water inlet tubing? If you’ve changed out the control unit, the chances are you having a systemic problem perhaps with the plumbing.
I don’t think your encouragement of other NxStagers to follow you will amount to anything because practically everybody is pleased with NxStage. I also don’t think your center will care if you discontinue as long as they don’t lose you as a dialysis patient. As far as NxStage is concerned, they won’t lose the private payment – that goes to the center. Besides, you must be getting closer to the end of your coordination of benefits period and will be going on Medicare anyways. When that ha-ppens you’ll be glad you’re getting government paid health care.
[QUOTE=Rich Berkowitz;18298]Mark, I’ve never heard of such a problem from anybody in the NxStageUsers group. I’m assuming you followed all of the instructions from the PF manual and that you’ve changed out the control unit. Have you changed out the water inlet tubing? If you’ve changed out the control unit, the chances are you having a systemic problem perhaps with the plumbing.
I don’t think your encouragement of other NxStagers to follow you will amount to anything because practically everybody is pleased with NxStage. I also don’t think your center will care if you discontinue as long as they don’t lose you as a dialysis patient. As far as NxStage is concerned, they won’t lose the private payment – that goes to the center. Besides, you must be getting closer to the end of your coordination of benefits period and will be going on Medicare anyways. When that ha-ppens you’ll be glad you’re getting government paid health care.[/QUOTE]
In my experience, NxStage is a lousy product with lousy support. Yes, I have taken all of steps you have suggested, still does not work. NxStage is being terminated because of all of the other things they have done to try to make my experience with them, a miserable one. Trust me, the list is endless. Being jerked around for five months when there was another serious problem with the Pure Flow. I should have fired them, right then and there. In the beginning, there was another problem with the Pure Flow, I called for supplies and warmers, etc. One month later, the supplies and warmers had still not arrived at my house. My partner is my Dad, who is a chemist. My Dad tried to explain to these fools that the Pure Flow was having major issues, did they listen, Nooooooo.
When I move to Kansas, I will contact the University of Kansas Home Dialysis Program, very, very nice people. I am tired of dealing with idiots and abusive jerks. Rich, I am glad that the program has worked out well for you and other individuals, that makes me happy. I am glad when my friends on dialysis are having an easy time. When I have read how some of the folks on this board have been treated, I have wanted beat the crap out of those abusers with my old PR-24(nightstick) or on the football field. Rich, I really respect your opinion, my friend. However, being happy with government paid health care on this earth is not my form of Nirvana. 
Mark
Hi Mark,
So, what equipment will you use in Kansas? You were doing daily HD, right? Will you switch to nocturnal and use a conventional machine? From what I hear, the set-up and take-down time on a conventional machine is time consuming enough that daily is less practical, though I believe it’s possible. Let us know what you end up switching to, and whether you’re happier with the machine performance.
With a conventional machine, you’d need to set up either standard or nocturnal HD at a center when you travel, too.
Perhaps switch to bags for a while and work with your center to resolve the issue through the proper channels. It seems as if the pureflow is just causing you more stress. If it were me, I would just switch to bags to relieve some of the stress and in the meantime work with your team to resolve the issue…
MM
Dori:
From what I have been told, to set up a conventional machine takes in the neighborhood of 30 minutes, when you are fully trained, about what NxStage takes after being trained. The advantage for me is that there are many things that I will not have to learn, because I do them, each and every day. I can look at a conventional machine in many aspects and I know what it does in many areas. Honestly, not a big travel person, every great blue moon, for a few days. However, Nocturnal is much, much better for the heart, per Dr. Agar. With Nocturnal, you can drink like a fish, running 6-7 days per week. I have been pestering the DaVita clinical staff for Nocturnal on NxStage for the past 2 and half years. I love the clinical staff at DaVita, not fond of DaVita Corporate, too slow, need to move much faster. The clinical staff at DaVita has been pestering corporate about the same issue, we are on the same page.
In fact, today, someone from the clinical staff is reading the riot act to NxStage. Someone else is having a different type of issue with the Pure Flow, for the same amount of time. I just want the equipment to work, no more, no less. Yes, every once in while, we have problems and parts need to be replaced, not a problem. Yet, consistent problems and constant day to day hassles will not be tolerated. I have a very difficult time thinking that a conventional machine could be worse than constant and daily hassles on NxStage. Rich stated that the vast majority of NxStage users are happy. Wait until they start to have constant and chronic problems. NxStage will talk to them on the phone and that is about the end of the company standing behind the product. When you say you are sorry to me and do not back that up with action, those words are empty.
As I stated to Dori, someone is being read the riot act. Putting up bags five days per week, right now, is very physically demanding. The reason for this is my PTH score was 19, driving my normally low calcium thru the roof, causing me to be exhausted. My Hectoral has been adjusted, starting to feel much better and I also have asthma. Cincinnati is the mold capital of the world, have had a very bad cough and a terrible time sleeping. My point is that it never should have come to this part where I have to start chewing people out.
Mark, obviously NxStage isn’t for everybody as you have stated. However, if others were have the problems you’re experiencing, scores of dialyzors would be joining you. From what I can tell, the opposite is happening. People are sticking (pun intended) and are getting the best treatments of their lives.
I know people who have done home dialysis with a “conventional” machine and have switched. I believe your estimate of 30 minutes to set up a machine may be understated. Thyere’s also all of the time one must allot to dealing with an RO. So we wish you luck and hope you go into the new therapy with eyes wide open.
Regarding DaVita and nocturnal treatments, I believe they’re cheating people out of the best modality available today. I’m glad to hear that local units want to start nocturnal. It’s too bad their pleas are falling on deaf ears.
[QUOTE=Rich Berkowitz;18314]Mark, obviously NxStage isn’t for everybody as you have stated. However, if others were have the problems you’re experiencing, scores of dialyzors would be joining you. From what I can tell, the opposite is happening. People are sticking (pun intended) and are getting the best treatments of their lives.
I know people who have done home dialysis with a “conventional” machine and have switched. I believe your estimate of 30 minutes to set up a machine may be understated. Thyere’s also all of the time one must allot to dealing with an RO. So we wish you luck and hope you go into the new therapy with eyes wide open.
Regarding DaVita and nocturnal treatments, I believe they’re cheating people out of the best modality available today. I’m glad to hear that local units want to start nocturnal. It’s too bad their pleas are falling on deaf ears.[/QUOTE]
In regards to DaVita, I could not agree more with you. In using Nocturnal with NxStage, in the vast majority of cases, people will live longer, guaranteeing more revenue. You are right, the local units are not the problem, it is the fools at the corporate level. The CEO of DaVita was complaining that they want more private insurance patients in the Wall Street Journal. Well, Big Boy, offer the treatments that the private insurance clients want and you will not have a problem. How stupid can you be? The main reason that I have not dumped DaVita is I would lose my Nephrologist, otherwise, they would have been fired long ago. I love the clinical staff at DaVita, they are truly outstanding. It is these other idiots I could live without, Nocturnal is much easier on the heart, the stupidity amazes me. If it were up to me, I would take my Nephrologist and clinical staff and dump the rest of DaVita. Again, when I move to Kansas, they will have so much time to get their act together, otherwise, they will lose a private insurance patient to the University of Kansas. When it comes to listening to the client, DaVita is lousy and believe it or not, Frensenius is even worse. DaVita states that they want to be the provider of choice, actions speak louder than words. If DaVita had a small amount of business sense, they would be listening to the clinical staff, as a guy named Sam Walton(Founder-Wal-Mart) would go from store to store talking to the greeters, floor people and stockers. Sam Walton did not spend the majority of his time with executives. One of the other things DaVita needs to do is have more than one location for Home Dialysis. It is idiotic that I have to travel half way across town to pick up Epogen, Heparin, and other supplies, when there are many DaVita locations around town, I have one DaVita location down the street from my apartment. To give you an idea, the population of Metro Cincinnati is 2.3 million and it takes 30 minutes to drive to the home clinic from my apartment. I do not see why Patients/clients, business, and insurance do not demand that these people become more efficient. If they do not wring costs out of the system, the government will do it for them. Abuse leads to restriction and absolute power corrupts absolutely. DaVita constantly complains about government interference, well, become more efficient and it will not be a problem. Can you imagine if Wal-Mart or Costco was run like DaVita, they would never make it. Believe it or not, treatment at Mayo and John Hopkins costs much less than the average metro hospital, why are the others not as efficient?
Has your home training nurse made a home visit to your house to check on your machine and the Pure Flow? It seems like that might help to see and identify the problem. Have they offered to change out the equipment? If there’s something wrong with the equipment, it would be better to have someone on-site to see it rather than switching from the modality.
So far as bags are concerned, I’ve heard that NxStage has a new bag warmer system that doesn’t require you to lift the bags as high as before. That might be another approach to allow you to stick with the daily treatment.
So far as the University of Kansas Dialysis Center is concerned, I know the home training nurse there. I haven’t heard that they’ve restarted their HHD program (they have a PD program). A few months ago I heard they’d lost most if not all of their home HD patients to a clinic that the KU nephrologists set up which was sold a few months ago to Renal Advantage Inc. I know the home training nurse at that clinic also. Unless something has changed recently, the RAI clinic only offers NxStage for daily (not extended time) HHD.
There are other dialysis clinics in Kansas City that offer nocturnal HD at home and in-center using conventional equipment. Fresenius and DCI offer nocturnal HHD and Fresenius and DSI offer nocturnal in-center and a couple of the local DaVita clinics are starting nocturnal in-center programs.
Beth, one of our NxStagers is doing nocturnal out of an RAI. So it doesn’t seem to be an issue with corporate; that is unless they don’t know about it.
Yes, I would agree, Beth, good ideas. It seems that they want the patient to do everything, regardless of the hours of hassle. I know DaVita has In-Center Nocturnal dialysis in Wichita, Kansas. I would go with DCI for Nocturnal, did not like Fresenius. One of the R.N.'s at DaVita worked for Fresenius Home Nocturnal, too many horror stories. I believe that Nocturnal would be much better for my heart in the long run, I am a cold water drinker. Being a diabetic, you want water, 24/7, like being in a desert. I want some of the people in dialysis to try living like that and then come back to me. The clinic at Fresenius did not even try to understand what it was like for me, harsh and cruel. When I read Dr. Agar’s site, I said to myself, “That is the end of Fresenius.” I wanted to commit suicide because I could not live like that. I was sick constantly at the clinic and I have a very strong immune system. Now with home dialysis, I have not been sick in 2 years, wonderful. I love home dialysis, I HATE clinics.
One thing that it’s important to know is that different clinics are different, even within the same corporation. Even though the corporation has certain policies local leadership decides how to implement the policies. Also, staff are different from facility to facility with some being more experienced and others less. Also some clinics seem to be more “patient centered” than others.
If you’re planning to move and want to find the clinic that would work best with you, if I were you, I’d consider scheduling transient dialysis treatment in the city/town where you’re planning to move and use the time to observe the care and interactions between patients and staff. Ask to talk with the home training nurse, social worker, and dietitian. Interview doctor. This way you’d be able to find out more about the people you’d be working with and how they treat their patients before you transfer your care to a clinic that’s on a list in the city/town where you plan to move where you might not be as satisfied.
Assuming your clinic won’t help you get a new machine from NxStage (and I don’t know why it wouldn’t), if you move from the clinic where you’re treated now, I suspect you’ll need to return your machine to them. This will give you a chance to get a newer machine that may not have the problem(s) you’re experiencing now. If you want nocturnal with the NxStage machine and you’re not set on Kansas but are interested in moving to the middle of the country, NxStage is recruiting participants for a clinical trial comparing nocturnal to daily dialysis at certain facilities in the U.S. If this list is up-to-date, the closest clinics to Kansas that are participating in this study are in Lincoln, Nebraska and St. Louis, MO.
So far as your thirst, I’m sure you know that with people who have diabetes, controlling blood sugar can help reduce thirst. Ask your doctor, nurse, or pharmacist to review your medications to see if any of them have a side effect of thirst. If so, ask your doctor if another drug without this side effect can be substituted or if you even need to take that drug. I recently watched a Medscape Nephrology brief (<3 min) video clip about the pill burden that dialysis patients have – most take 30-40 a day and a patient was prescribed almost 80(!) pills a day, half of which are phosphate binders. How could anyone take that many pills and stay within his/her fluid limit on dialysis? You’re right…staff may not understand how difficult the treatment regimen we ask patients to follow is and most of us could ot follow the regimen we ask patients to follow. In my opinion, staff and patients could work more collaboratively together to try to identify the triggers for thirst and to help patients develop more individualized approaches to fluid/thirst management.
http://www.medscape.com/viewarticle/707181 (free registration required)
[QUOTE=Beth Witten MSW ACSW;18332]One thing that it’s important to know is that different clinics are different, even within the same corporation. Even though the corporation has certain policies local leadership decides how to implement the policies. Also, staff are different from facility to facility with some being more experienced and others less. Also some clinics seem to be more “patient centered” than others.
If you’re planning to move and want to find the clinic that would work best with you, if I were you, I’d consider scheduling transient dialysis treatment in the city/town where you’re planning to move and use the time to observe the care and interactions between patients and staff. Ask to talk with the home training nurse, social worker, and dietitian. Interview doctor. This way you’d be able to find out more about the people you’d be working with and how they treat their patients before you transfer your care to a clinic that’s on a list in the city/town where you plan to move where you might not be as satisfied.
Assuming your clinic won’t help you get a new machine from NxStage (and I don’t know why it wouldn’t), if you move from the clinic where you’re treated now, I suspect you’ll need to return your machine to them. This will give you a chance to get a newer machine that may not have the problem(s) you’re experiencing now. If you want nocturnal with the NxStage machine and you’re not set on Kansas but are interested in moving to the middle of the country, NxStage is recruiting participants for a clinical trial comparing nocturnal to daily dialysis at certain facilities in the U.S. If this list is up-to-date, the closest clinics to Kansas that are participating in this study are in Lincoln, Nebraska and St. Louis, MO.
So far as your thirst, I’m sure you know that with people who have diabetes, controlling blood sugar can help reduce thirst. Ask your doctor, nurse, or pharmacist to review your medications to see if any of them have a side effect of thirst. If so, ask your doctor if another drug without this side effect can be substituted or if you even need to take that drug. I recently watched a Medscape Nephrology brief (<3 min) video clip about the pill burden that dialysis patients have – most take 30-40 a day and a patient was prescribed almost 80(!) pills a day, half of which are phosphate binders. How could anyone take that many pills and stay within his/her fluid limit on dialysis? You’re right…staff may not understand how difficult the treatment regimen we ask patients to follow is and most of us could ot follow the regimen we ask patients to follow. In my opinion, staff and patients could work more collaboratively together to try to identify the triggers for thirst and to help patients develop more individualized approaches to fluid/thirst management.
http://www.medscape.com/viewarticle/707181 (free registration required)[/QUOTE]
Many good points. Right now, I run at 6-7 hours per treatment for fluid removal. I simply refuse to live like a man who is banished to the desert. As my RN mom would have said, “If someone is not living it, they really do not have a right to comment on it.” Dialysis is the only industry in which I am aware that patients are paying thousands of dollars for a service and they are treated like garbage. Individuals with physical and mental challenges are treated in a much better fashion than dialysis patients, I know this from years of working experience. Yes, staff may not understand, but, as a function of their job, they NEED to understand. I will bet you that if they lived like we did for one or two weeks, they would have vastly different attitudes and ideas. It is amazing to me they sit and tell the outside world how we are suffering and how horrible it is for the client/patient. Yet, then they turn right around and institute the same policies that are creating the suffering for the client, PLANET EARTH, DO YOU HEAR ME???
The Nephrologist and the clinical staff that is overseeing the care for the client taking 80 pills per day, has a few screws loose. When I asked my primary care physician why we could not eat what we wanted with our medicine, my primary care physician of 35 years experience said, “That is really screwy.” How would the staff enjoy being treated like a child? When I was training, I really enjoyed listening to my Dad lecture them about mechanics and chemistry, it gave them a taste of their own medicine. My Dad taught Chemistry to Nursing students for years, he enjoyed it because they wanted to learn. I am more than willing to listen to anyone. However, when someone tries to lecture me as they would a child, they will be turned off.
All I can say in response to your posting is that I’m sorry if you feel like you’ve been treated like garbage. I’ve talked with others who felt that they hadn’t been treated with respect and dignity, but I’ve also talked with patients who state that they really like the staff at their dialysis clinics and they believe the staff genuinely care about them. Some clinics have new staff sit in a dialysis chair for the length of a treatment to see what it feels like – at least as closely as it can without having needles in their arm. I don’t kow if any clinics have new employees follow the diet and fluid limit for a week or two, but I’ve often said that would help staff have a better perspective on what we ask patients to do.
I’m not aware of any drug that those with kidney failure can take that allows them to eat everything they want. If the pharmaceutical industry had come up with such a drug, they’d have nearly 400,000 people lined up to take it. At this time, nocturnal hemodialysis is the closest to replacing kidney function and people who do it 5 or more nights a week can eat and drink nearly normally from what I’ve heard.
I suspect things that leads to cravings for food or fluid among dialysis patients is that it’s a pretty common reaction to a limit to want what is limited. Some have reported keeping busy overcomes stress and boredom that may trigger people to drink. You can find other tips for dealing with thirst written by dialysis patients here:
Yes, I know that there are many individuals who work in the dialysis clinics that care about the clients. Yet, with any group, including police officers, we have bad apples. In my view, bad police officers and law enforcement officers who are corrupt deserve to hang. These individuals are not above the law.
I respect people that walk the walk, not just talk the talk. Do you walk the walk or just talk the talk? Are the staff of the clinics going to live in reality or just babble a bunch of platitudes?