So Few Posters in Home Dialysis Section

[David Pascoe]

Why are there so few people who post re: home dialysis, particularly PD? Not just this, but all the other forums, too? Like for the whole month of August maybe all of ten posts.

Everyone totally satisfied, no questions at all?

Computer illiterate?

I just don't get it.

[Vt Big Rig]

For myself ..... I do not do PD. I do NxStage so I feel unqualified to comment on any PD questions.

I think I comment too often in the home section......

But the I believe Epoman's original effort was to get all folks who has this crappy disease a place to vent, get help, get a shoulder to lean on, and to try to help help folks anyway they can.

It has done this for me and I thank his wife everyday for keeping this going.

Just my 2 cents.

[SooMK]

I can't comment on PD either but I do know IHD has far more activity than many sites and there's lots of expertise in everything to do with CKD and ESRD. I would recommend doing a search on "PD" since you can always "resurrect" a thread by adding a new comment or just post a new question if you have something specific you're concerned about. Since life isn't always as tidy as forum names there may well be relevant posts on PD in other forums. I hope you will hang around awhile to see that this is a great site.

[David Pascoe]

Just doing my best to stir the pot. Its not that a post isn't generating interest,  I can tell from the high number of views that people just aren't responding. C'mon, folks, don't be shy. This is too serious for you to be hiding behind your monitors. You aren't reading this forum because you have toenail fungus.

[Charlie B53]

Could the lack of response be that many of us fail to see or understand if you pose a question we feel worthy of responding to?

If you are merely eliciting opinions, perhaps many do not have an opinion worth mentioning.

Many posting in the various areas fall into a few categories,

Looking for information, mostly the experiences of others.

Sharing information, experienced, read, or witnessed.

Venting frustrations.

Various responses to all the above.

This list is NOT all inclusive, but many many posts fall into these.

While I have been on PD a bit over two years so far, I only found this site just over a year and a half ago.  I have made a few posts, nothing in excess, I believe.  But I have share experience, opinions, and commensurated with some of those that needed it.

Most threads like this one tend to fade as most people tend to pay attention to more current conversation, rarely reviving old ones unless they have found new information pertinent or thought of a more suitable response.

I am sooo thankful for my spell-checker.  I am pretty sure that my spelling is actually pretty good, just my fingers are not so good at hitting the correct keys!  What more can I say, I am more adept at using hand tools than a keyboard.

Take Care,

Charlie B

[justagirl2325]

I have no experience with PD, frankly it still sounds weird to me

Hubby has been on home hemo just under a year, we do ok with catheter and really struggle with the fistula - seems a different problem every time we try it.

[JW77]

Lot of other groups these days, kidneypatientguide, homedialysiscentral, and all the Facebook groups..  People I think sometimes use the internet less in the summer.  I do generally.. 

I try to answer questions IF I can,

[David Pascoe]

In my post "Erratic UF Results" I was asking for people's experience with their cyclers and their UF results. Everyone who uses a cycler, regardless of brand, has this experience. And yet in two weeks no one responded. This is what happens to me regardless of who or where I ask this question.

When I ask the professionals, they just say "Everyone's different." THAT is a disingenuous answer and I resent it.

What can I conclude from this? That it is a taboo subject?

That no one knows what UF means?

Just yesterday my Liberty 0 cycle or first cycle UF was MINUS 856. That scares the hell out of me. Where did nearly one liter of fluid go? All reabsorbed by my system? If so, something is seriously wrong and yet no one will indicate it as such. This not only scares me, I'm starting to get very angry over this issue and I'm about to stop being a nice guy and become confrontational with my clinic staff. I'm trying to avoid burning bridges here by getting answers elsewhere, but failing at that too.

We can set our machines to count or not count the 0 cycle in the total UF result. If set to NOT count, one can have results like mine and still have the total result look respectable. Yesterday's result looked like this:
Cycle 0: -446
Cycle 1: +388
Cycle 2: +420
Total:    +808

I take 808 to be a respectable and good result. But it doesn't count the 0 cycle, which is wrong not to count because it IS a cycle and should be counted, not ignored. It is, of course, different than the others owing to the dwell time being at least twice as long, running from the mid day exchange 'till early evening. Yet the difference between this and the other cycles is more than double in the case of my -856 result.

All I am asking is whether others get similar results, OR NOT. Is a minus 400 result in cycle 0 normal?

[jcanavera]

According to what I have read, PD accounts for about 20% of the dialysis patients.  It's probably one of the most gentle forms of dialysis, and if you follow the basic practices of cleanliness, is realitively a simple process.  It doesn't require a partner to administer. 

The biggest challenges amount to understanding the cycler and how it works, understanding how important it is to monitor, weight, blood pressure, and UF. For best results you need to understand the relationship of the different dialysis fluids to those readings that you log daily. 

Dependent upon your doc., you may be given complete freedom to make your fluid choices which affects your success.  Quite honestly PD patients are probably more hands on and active in their treatment than most.  In some cases this involvement may be asking more than many patients can give, thus leading to their smaller numbers.  After seeing the clientele on the hemo side and PD side, the typical PD patient probably is younger, has fewer physical infirmities, and probably is more comfortable with technology than the typical hemo dialysis center patient.  All of this probably leads to fewer issues and maybe less need for PD patients to frequent forums like this.

Jack

[jcanavera]

In my post "Erratic UF Results" I was asking for people's experience with their cyclers and their UF results. Everyone who uses a cycler, regardless of brand, has this experience. And yet in two weeks no one responded. This is what happens to me regardless of who or where I ask this question.

When I ask the professionals, they just say "Everyone's different." THAT is a disingenuous answer and I resent it.

What can I conclude from this? That it is a taboo subject?

That no one knows what UF means?

Just yesterday my Liberty 0 cycle or first cycle UF was MINUS 856. That scares the hell out of me. Where did nearly one liter of fluid go? All reabsorbed by my system? If so, something is seriously wrong and yet no one will indicate it as such. This not only scares me, I'm starting to get very angry over this issue and I'm about to stop being a nice guy and become confrontational with my clinic staff. I'm trying to avoid burning bridges here by getting answers elsewhere, but failing at that too.

We can set our machines to count or not count the 0 cycle in the total UF result. If set to NOT count, one can have results like mine and still have the total result look respectable. Yesterday's result looked like this:
Cycle 0: -446
Cycle 1: +388
Cycle 2: +420
Total:    +808

I take 808 to be a respectable and good result. But it doesn't count the 0 cycle, which is wrong not to count because it IS a cycle and should be counted, not ignored. It is, of course, different than the others owing to the dwell time being at least twice as long, running from the mid day exchange 'till early evening. Yet the difference between this and the other cycles is more than double in the case of my -856 result.

All I am asking is whether others get similar results, OR NOT. Is a minus 400 result in cycle 0 normal?

David, my wife uses a Baxter cycler so I'm not familiar with how yours does its recording.  I'm pretty sure based on my experience with the Baxter equipment, the Initial drain is not considered in the final UF total that her machine displays.  I do know what my wife's final fill of extraneal was the day before and I do note what the initial drain output is the next day.  In many cases because she is a slow drain, some days we pull out more than was put in the day before and sometimes less, and sometimes it's a break even. 

I have learned that her machine is not perfect on determining when that first or final drain is finished.  It is only measuring drain flow over time, and from that it guesses that you are drained.  The problem is that this methodology for some patients is flawed and by adjusting your body position during those 2 drains, you may be able to extract much more fluid.  To do that I have to monitor those two drains carefully, and if the Baxter thinks she is done, and i don't  think so, I stop the machine when it goes into its fill cycle and institute the manual drain feature of the machine.  She changes her body position and we hit manual drain.  The machine does keep track of the output from these manual drains.  Experience shows that she can get 300-500 additional ml by using this technique.  Once we see that the manual drain is no longer putting out meaningful amounts of fluid, I give control back to the machine and it resumes its fill.  The key thing to learn  is that the machine is pretty dumb in knowing if you are completely drained or not, and that you can try different positions for your body when draining that can enhance that first and last drain. 

Hope this helps.  If you aren't getting the answers from your PD nurse, you might try the support folks who built your machine.  Baxter has 24 X 7 support for patients and I can tell you that those folks are very patient and will give you a lot of information about the cycler and techniques to help you maximize your use of the machine.  They will not override your machine programming but they will give you information and suggestions to give to your PD nurse to maximize your treatment.  My PD nurse also gave me the book on the operations of her cycler.  He knew I had a technology background and thought I'd enjoy having the additional information.  He was right.  I read the book carefully and he used to tell everyone that I knew more about the operations of her cycler than him or her doc.

Jack

[Whamo]

Baxter's people don't always answer the phone on a timely basis.  The nurse on call doesn't always return calls promptly.  It's good to read the manuals because they reveal nuances of the machine the neprho centers leave out.  I'm on PD 11 hours a night so I'm sick of it.  I'm trying to get back on the transplant list by getting rid of my HEP C.  I'm getting another liver biopsy, number 3.  The first one was 30 years ago.  The second one failed because they didn't put me out.  I don't handle pain well.  The next one is in a week.  I hate going under the knife.

[David Pascoe]

Jack, I think you hit the nail re: why so few PD contributors. I since have asked this question of my clinic staff and got a similar answer. Said: many are uncomfortable with it, some not sufficiently skilled, and others just plain lazy, and prefer being administered to.

One thing I've noticed is that home dialysis people are highly literate, judging by the quality of posts.

I know the fist cycle is not counted (in set up options you can add it, if you prefer) but it IS nevertheless a cycle that either adds or removes fluid. That is the bottom line. It is not counted cuz the machine is not doing a complete cycle: we do half, the machine the other half.

 I have the the advantage of always sleeping on my back and never moving, so where I place the catheter is where it stays so I presume my results are at least consistent from that standpoint. On the mid day, sitting in a chair I can squeeze out another 2-300 ml. by bending over and squeezing my gut  . . . . in the event I feel that worthwhile which I don't.

I've called Fresenius and got no help; they just sent me a new machine. They have a lot of lawsuits so I assume employees have been told to keep their mouths shut. Ask a question, you get the same answer from all Drs. and nurses: "Everyone is different."  No, kidding. Really? Gee, I never knew that.

The thing that really irks me is that the clinic has all the data from all their PD patients via the thumb drive monthly downloads but they will not divulge anything about it. And please don't say patient privacy. Data UNATTRIBUTED to a named person is NOT a violation of privacy.