Thinking of Changing from NxStage to Baby K

From NDXUFan12

I am thinking of changing from NxStage to the Baby K machine. One of the main reasons is that my Dad assists in my treatments with NxStage at night. With the 5 hour treatments, he goes to sleep, then goes home, and it unable to sleep again. My RN sister says this is really becoming hard on him. My Dad is in excellent physical condition, however, he is almost 70 years old, and needs to slow down. How much time, do you need, every day to maintain a Baby K machine? I do not pay a water bill and I am used to hours and hours of sitting, because of my old job. What does everyone think about this idea? I think noctural dialysis would be much better for my body in the long run.

Thanks,

Mark

Hi Folks

Mark , can you give us a bit more info. Not sure if this helps
I only used the nxstage, have seen other types of machines. Could have pick one of three different machines. After looking into them the nxstage seem to give the most bang for the buck. I can take it with me if I go away. I can alter my run time. As it is I’m on nocturnal. But I have done tx’s on short or long(3 to 4 hrs) during the day. Nocturnal is meant for night time, but what if your work set up you have work nights. Then if you want nocturnal ,it just means doing long tx more than 5 hrs . So if you sleep during the day then you would do nocturnal during the day when you sleep.Some seem to have issues with the nxstage, but until the next model comes it seems the easy to set up and run. If your just started on nxstage it can be hard ,but after 20 months on nxstage for all the issues . I’ll still take the nxstage. Now if if a new machine comes out next week or month. That seem and is better in all ways. size , travel , etc then I’d jump ship in a heart beat. I’m not one of those that is stuck on a machine.

So Mark tells us some more.Why do you to change, your physical condition? Me, I’m 51 ,105kilo dry. I 've lost some of get up and go ,but that has not much to do with dialysis. I’ve just have been out of the loop for a # of yrs. Still do a lot , the house has become mine thing, which took a lot out me. I used to work very physical work. the change from being able to do hard work to house was a hard change. So I can still physical work not in a work settings… But still can do it here at the house.
thanks
bob obrien

Hi Mark,
You may be thinking inside the box a bit here. With an add-on heparin pump, a NxStage System One can be used for nocturnal treatments, so you can keep your machine. If you don’t travel, it might not matter, but I haven’t heard whether Fresenius has jumped through the necessary FDA hoops to get its machine approved for home HD, so it may be a moot point.

Why are you doing 5-hour treatments with NxStage? I hadn’t heard that anyone was doing that, but once you’re doing 5 hours, you might just as well do 8. You’re right that it could be better for your body in the long run–longer treatments remove more phosphorus, beta-2 microglobulin, and other toxins, as well as removing water even more gently than you’re doing now.

It has been proven that Noctural Dialysis is a very good deal for Diabetic patients. In addition, with the Noctural plan, no fluid limits, which is hell on earth for a diabetic. One very good nephrologist told me that in his opinion, the Baby K has better clearance rates. Until I did a five hour treatment, I was not getting enough dialysis. I am a diabetic, I hate and detest fluid limits. The bigger machine can take off fluid at a much slower rate than the NxStage machine. I agree, you can use NxStage with a heparin pump. However, my provider, DaVita believes that the cartridge will leak with a longer treatment. I do not believe that because I have done it, with no issues. It is amazing how the dialysis industry treats us as children, many are control freaks.

Another reason for the switch is I hate binders. It is not their job to try to control me as if I am a child. I have more education than the majority of them. With 48 hours per week of dialysis, none of those stupid binders. A classic example of this arrogant attitude is when the staff went to get something to eat at Wendy, I asked to be silly, “What are you going to buy for me?” To which they arrogantly replied, “You know you are not allowed to have that!” Well, why in the name of the Almighty am I taking those binders???" My last score was 2.8, I do not want to hear it. I will eat as I please, with my medicine, if you do not like it, life is tough! The Nephrologist does not have a problem with it, so what is their problem?

I like the staff the majority of the time. However, they need to be made to practice what they preach, they need a taste of their own medicine. In Psychology, clinical psychologists must undergo a year of therapy before they can practice without a license. I think an excellent idea, would be for these Nursing people to live by the rules they give us, for a week or two. I have three nurses in my family, so it is not hate issue. I think it would be excellent training. I am 6’2", 215, I would love to beat the arrogance out of a few of them. My dry weight is 98. However, my fluid weight was as high as 108 with no fluid on my legs, I was in the hospital, with a staph infection. The Nephrologist did not want any fluid removed from me. However, I have not been in the hospital for a year and half. Life is good.

Mark

hI fOLKS

Hi Mark, I’m still confused. I just watched a 1/2 hr show put on by davita that davita company drs nurses etc all pushed the nxstage as the machine of choice. Myself really don’t have trust in davita. I spent 1 and 1/2 with davita. I look at davita as setting centers that will offer home hemo, but davita will keep centers just as stockyards.

As to size and intake of food and water. I do 6 nights a week(Wellspan) , I started in center 3 days(davita). Back then the drs made the call on what my dry wright would be, they wanted it at 98 kilos. While in center life sucked(sorry no other way of putting it). Once I left davita and fell into Wellspan of York pa, things started to turn around. Nurses and social worker that really tried to help. Drs that are open to talking to the person on dialysis.

Now on nights I still watch my intake and take binders. But I eat and drink more freely things that doing 3 days would never be able too. My run times on nxstage go 8.5 hrs while I sleep. My wright take off has been as high as 3 kilos but avg. 1.5 a night. my dry wright is 105 kilos.

You are the one who make the call on the machine, but it sounds like nocturnal might work best no matter machine. So before you your call on a machine keep posting here and check out others sites by folks who post here and have their own sites. Gus is just one of the people you should look to give more info on davita and nxstage. But Gus is just one of many. Rich Berkowitz and Bill Peckham are two more.

thanks
bob obrien

I want the long treaments thru the NxStage machine or the Baby K, I really do not care about the machine. DaVita has 7% stock ownership in NxStage, so would that be a conflict of interest? After stating that they were going to run clinical trials on the expanded treatments and having them come to a halt, I was not a happy camper. I need to move forward for what is best for my health, over a long span of time. I suggested to DaVita that I could use NxStage on vacation, I have been using it for two years. I could buy a short-term policy to shield DaVita from any financial loss due to damage of the machine. I feel that is a very reasonable way to go. However, many times, DaVita and reasonable do not go together in the same sentence. If DaVita or the insurance company have an ounce of intelligence, the economics of the situation are quite clear. Do they believe a clinic or running at a private house is going to be more economical? Would I be able to work with Wellspan? I believe that DaVita is being very anal about this situation. Bill Peckman’s site is outstanding.

Mark

Hi Mark,

It’s the job of lawyers to prevent exposure to risk, and that’s what they do (sometimes to the exclusion of reason). It definitely sounds like nocturnal would be a good fit as far as getting rid of fluid limits (how many nights would they let you do/week?) and binders. The machine really is secondary to the treatment.

Hi Mark,
As people who have been on both Fresieus (I could never spell it) and Nxstage let me tell you that Nxstage out beats the Freni. We have done Nocturnal on both. My husband Ralph is about 120K and the Freni did OK but he still needed to watch somethings But with Nxstage. He is always eating stuff to keep his phosphous up. His numbers are great. Our center thought that the Nxstage machine would not give him the clearences that the Freni did because of his size. But it sure does. As for me I am his caregiver/do it all. The amount of work for the Freni is unbelieveable! I cut my workload by 90% when we changed to Nxstage. Ralph eats what he wants and drinks what he wants. NO Binders!
We go on between 7:30pm and 8:00pm and are off about 5:00am.( I need to go to work). 6 nights a week.
We both sleep all night unless there is an alarm which I than attend to. This does not happen very often.
Please give it some more thought about staying with the Nxstage.
Where do you live? Can Dad stay with you and sleep at your house?
Pat

In simple words, “I would never look back at using Incenter type Machines” …my experience with home dialysis back in late 1980s was no way better than what I am using now. You should be looking forward, not backwards. There’s better home dialysis tech than what we have now.