Not happy with the Fresenius 2008K@Home.

[kayooh]

I have been on dialysis since June 2008.
I was dialyzed on a variety of machines from the Gambro Phoenix to the PBraun to the Fresenius 4008 and then the Fresenius 5008.
By far the worst is the Fresenius 2008K@Home and the best was the Fresenius 5008.

I and my wife started training on the @Home machine six weeks ago and sadly the machine is not reliable or consistent. Between it and the Phoenix I prefer the Phoenix.

The problem is that I am the first Home Hemodialysis patient at my small local clinic and they are refusing to replace the K@Home with the K2 or even the K.

Because of my considerably weak heart, I can only dialyze under a profile and that consists of one hour-on followed by a half hour off, that is repeated for a total of four hours.

The head nurse at the clinic I dialyze at tells me that UF profile is disabled from the factory and that the K and the K2 are not allowed to be used at home by the Feds!

Is that true!?

Is there hope of finding a clinic that will allow me to do HD at home in the greater Houston, Texas area, on a machine that employs UF profiles!?

Any help would be greatly appreciated.

[Desert Dancer]

The UF can be turned on and off manually. I understand that might be a PITA but it would solve your problem.

[kayooh]

I tried the manual on/off. It turned a four hour session into five and a half hours.

I saw posts from patients who were using the K and the K2 at their homes, I would love to hear from them as to who provided them with those machines.

I even offered to purchase my own K but the management at my clinic refused this option.

Thank you.

[Desert Dancer]

I tried the manual on/off. It turned a four hour session into five and a half hours.

 

[kayooh]

I tried the manual on/off. It turned a four hour session into five and a half hours.

 

What is so confusing about what I have said?

[lmunchkin]

My Fresenius clinic asked it we would do Baby K, but we refused.  Its not feasible for us, but we are happy with the NxStage.  I hope someone on here can answer your question. 

lmunchkin
 

[kayooh]

My Fresenius clinic asked it we would do Baby K, but we refused.  Its not feasible for us, but we are happy with the NxStage.  I hope someone on here can answer your question. 

lmunchkin
 

Thank you very much for your input.
They did offer me the Nxstage but that would not have worked with me.
The Nxstage does not have UF profiles!
I need to use a machine capable of both UF and sodium profiles.

[Desert Dancer]

I tried the manual on/off. It turned a four hour session into five and a half hours.

What is so confusing about what I have said?

I fail to understand how turning the UF on and off adds an hour-and-a-half to your treatment. Turning it off involves pushing one button.  Turning it back on involves pushing four buttons. I'm not making the connection.

[lmunchkin]

Sorry to be so ignorant, but why the need for profiles?  Is this something I should be concerned with?

lmunchkin

[kayooh]

Sorry to be so ignorant, but why the need for profiles?  Is this something I should be concerned with?

lmunchkin

As far as I know, profiles are used by dialysis patients with weak hearts such as myself.
Fluid removal from the blood stream is tailored in such a way that the strain on the heart is reduced/minimized throughout the session.

In my case, is most comfortable with a hard pull for the first 60~70 minutes (2~2.5 liters/hour) followed by a 30 minute rest where the UF rate is 0~0.1 liter/hour.

Then the UF is started again but with a lower UF rate (1.5~1.75 liters/hour) for 60~70 minutes, possibly shorter.

This cycling continues until all fluids are removed in the first 2 1/2 to 3 1/2 hours.
The remaining time through the fourth hour is spent clearing the blood of toxins with 0~01 liter UF rate.

I have tried every other profile/non profile method and I always crash.

 

[kayooh]

I tried the manual on/off. It turned a four hour session into five and a half hours.

What is so confusing about what I have said?

I fail to understand how turning the UF on and off adds an hour-and-a-half to your treatment. Turning it off involves pushing one button.  Turning it back on involves pushing four buttons. I'm not making the connection.

The Software on this particular machine produces the addition of the down time to the back end of the dialysis session.
So a four hour session with three half an hour rest periods between each two consecutive UF hours, will yield a 5 1/2 hour session!!!
Other machines recalculate and compensate and finish the session in 4 hours.

[Desert Dancer]

I tried the manual on/off. It turned a four hour session into five and a half hours.

What is so confusing about what I have said?

I fail to understand how turning the UF on and off adds an hour-and-a-half to your treatment. Turning it off involves pushing one button.  Turning it back on involves pushing four buttons. I'm not making the connection.

The Software on this particular machine produces the addition of the down time to the back end of the dialysis session.
So a four hour session with three half an hour rest periods between each two consecutive UF hours, will yield a 5 1/2 hour session!!!
Other machines recalculate and compensate and finish the session in 4 hours.

Okay, that makes sense. But can't you do the calculations yourself and increase the total UF to compensate for the down time?

Forgive all the questions, please... I've never needed to do any kind of profile and I'm just trying to see if I can figure out some kind of workaround for you. If you want to PM me details of just what your profile needs to be I'd be willing to screw around with my own machine to help you figure out a solution. I'm kinda doubting you're going to get the machine you want and two heads are better than one on something like this.

[RenalSurvivorDotCA]

I just started last month on the BabyK machine. While I was training in-center on this machine I could simulate a UF profile by putting in a larger goal and reducing it each hour.

If my goal was 3000ml in 5 hours that would be a flat 600ml/hr UF rate. I would up the goal to 4500 which would give the UF rate of 900ml/hr. After 1 or 1.5 hours, I have removed ~1400. So now I just need to remove 1600 in the next 3.5 hours.. or a gentle UF rate of 450. I try to have the UF rate as low as I can in the last hour or so; that's why I do a profile. Anything under 500ml/hr is what I aim for.

If you have to turn off UF for 1/2 hr or so, you will have to play with your goal more closely. Put it much bigger at the start.

 Wow. 2.0-2.5l/hr is massive! If I pull much more than 1.5l/hr I'll cramp up.

[Desert Dancer]

I just started last month on the BabyK machine. While I was training in-center on this machine I could simulate a UF profile by putting in a larger goal and reducing it each hour.

If you have to turn off UF for 1/2 hr or so, you will have to play with your goal more closely. Put it much bigger at the start.

This is precisely what I'm driving at!

[kayooh]

I just started last month on the BabyK machine. While I was training in-center on this machine I could simulate a UF profile by putting in a larger goal and reducing it each hour.

If my goal was 3000ml in 5 hours that would be a flat 600ml/hr UF rate. I would up the goal to 4500 which would give the UF rate of 900ml/hr. After 1 or 1.5 hours, I have removed ~1400. So now I just need to remove 1600 in the next 3.5 hours.. or a gentle UF rate of 450. I try to have the UF rate as low as I can in the last hour or so; that's why I do a profile. Anything under 500ml/hr is what I aim for.

If you have to turn off UF for 1/2 hr or so, you will have to play with your goal more closely. Put it much bigger at the start.

 Wow. 2.0-2.5l/hr is massive! If I pull much more than 1.5l/hr I'll cramp up.

I am aware of this strategy but I would love to do without it.
I am a mathematician by nature but while on the machine I could not multiply, divide or even subtract.
It is as if the machine sucks my brain out.

That is why I am looking for a dialysis company that will let me use a machine with the pre programmed profiles where I set it before the session and forget it.

This constant calculation worries me immensely.

[Desert Dancer]

I am aware of this strategy but I would love to do without it.
I am a mathematician by nature but while on the machine I could not multiply, divide or even subtract.
It is as if the machine sucks my brain out.

Do all your calculations beforehand, not while you're on the machine. If I had to do this, I'd do all my calculations earlier in the day when I set up the machine. If you're anything like me you probably have to take off roughly the same amount each treatment. It would only involve calculating it once - at your leisure - and then making small adjustments depending on how much fluid you actually gain.

I don't know whether the K is approved for home use but it wouldn't surprise me to find it isn't. Most people seem to think dialysis patients are imbeciles and - oh, Lord - how could we ever manage a profile? Wish there were some other solution for you.

[lmunchkin]

All I know, is with NxStage (which is not nocturnal) I can set UF to what needs to come off him and it comes of in the first 2-2 1/2 hrs.  The rest is all toxin removal.  Generally 30 min or so is left after he has met his goal.

But you guys are doing Nocturnal, so I understand the concept of setting perimeters before hand, so as to sleep through it all.

lmunchkin
 

[Desert Dancer]

But you guys are doing Nocturnal, so I understand the concept of setting perimeters before hand, so as to sleep through it all.

That's the whole problem - he's not doing nocturnal, he's only doing 4 hour sessions. If he were doing nocturnal he wouldn't need to worry about his UF rate because it would be so darn low to begin with.

[lmunchkin]

So they allow the Baby K for short sessions also?

[Desert Dancer]

So they allow the Baby K for short sessions also?

Yep, the Baby K is the only kind of machine my center has (besides the NXstage). It's primarily a training/self-care clinic but there are a good half-dozen people I know of personally who dialyze in-center, either short daily or M-W-F.

[lmunchkin]

Well at least that option is out there.  Maybe if Kayoo could set the hour UF rate a little lower (per hr.) it wouldnt bottom her BP soo much.  I know when I set UF goal on J then toggle to rate per hour (Goal 1.5 rate .50 per hr) it seems to not want to crash him.  If it did, I would drop to -0- and clean toxins the rest of the way!  Haven't had to do that in a long time, cause we are where we need to be.

Its different for everyone!

lmunchkin
 

[kayooh]

It is apparent that the only way I can deal with this machine (the babyK) is to upgrade the software to where a UF rate higher than 2 liters/Hour and a goal higher than 5 liters, are allowed.

My body can withstand a UF rate of 2.5 liters/hour in the first hour only.
After that I need at least 30 minutes of rest (nominally a UF rate of 0 liters/hour but in actuality it does pull ~100 ml. in the 30 minutes).
In the following hour I can pull another 1.5~2.0 liters followed by the aforementioned 30 minutes of rest.

Beyond the first 2.5 hours I am (rather my heart) is done.

That is why I need to remove as much as I can up front.

Of course the babyK software is not set to allow any of the above.
Hence the request for help with upgrading/flashing the existing software.

I'd appreciate it if anyone can help me with this issue.

Thank you all.

[Desert Dancer]

It is apparent that the only way I can deal with this machine (the babyK) is to upgrade the software to where a UF rate higher than 2 liters/Hour and a goal higher than 5 liters, are allowed.

Have you gone into the 'RX Parameter' submenu from the main screen and tried to change the 'Max UF Goal'? I turned on my machine just now to try and see if it would limit the number I put in. It was set to 4,000 and when I changed it to 6,000 and 8,000 it accepted the changes with no problems or error messages.

[kayooh]

It is apparent that the only way I can deal with this machine (the babyK) is to upgrade the software to where a UF rate higher than 2 liters/Hour and a goal higher than 5 liters, are allowed.

Have you gone into the 'RX Parameter' submenu from the main screen and tried to change the 'Max UF Goal'? I turned on my machine just now to try and see if it would limit the number I put in. It was set to 4,000 and when I changed it to 6,000 and 8,000 it accepted the changes with no problems or error messages.

I was told this can't be done because the software would not allow it!

I'll try it myself and get back to you.

Thanks.

[Desert Dancer]

I was told this can't be done because the software would not allow it!

Methinks someone is fibbing to you (or just doesn't know). I've always gone in and set my own parameters: dry weight, heparin rate, disabling the BP cuff, etc. I've never had a problem.