I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: 7piglets on January 23, 2009, 07:46:08 PM
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Just curious is anyone on Pd cycler for 5 or 6 days instead of all 7
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I do EVERYNIGHT (grrr) and one manual bag. So I carry fluid 24/7.
It would depend on your PET test. More dialysis is always better for you.
Good luck with the new cycler. :cuddle;
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I was allways told to Do PD everyday. Are you on another schedule? What solutions are you on? How are you labs doing with that kind of dialysis frequency.Just curious is all. You have raised allot of questions.
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I have not yet started I begin pd on Mon nite..RIght now I am on hemo ..If I gain (which is rare) it is very little..They are starting me on 1.25 bag..and I will do 4 exchanges and one fill which will stay in all day .. I am just curious.. I also wonder.. I am very thin yet they want me to fill 2000 I really think that is alot ..but I am continually told it is a small amount.. (I think this is just their protocol and they dont look at individual they are just reading from a book) I have never filled more then 1000 during training and then my stomach hurts so bad ..I feel like I did 1000 situps..
As for days..I am just curious I know if I ask them they will tell me no not an option but I asked about not being filled during day and they said not an option yet I found on internet some people do do this ...I guess I will do this for the 3-4 weeks and once we do pet I will know better and be able to see if an option..
I think it would just be mentally so much better to have a day off if you know what I mean
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I've never heard of skipping a day, mainly because the more dialysis, the better.
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That's pretty much the regiment my wife is on (she does 2500 for each fill right now).
Assuming you're able to sleep OK, I don't think you'll really need a "day off". Once you get the hang of setting stuff up, it will only take 10 minutes or so. So unless you want to stay out late or whatever, skipping it and just going to be really wouldn't be that much different than hooking it up and going to bed.
If they're actually saying anything "isn't an option" that seems pretty inacurate. From what I understand, it's just sort of a continuoum of how much dialysis you do, i.g. filling with 2000 will give you a little better filtration/clearance than filling with 1500, and carrying fluid during the day will give you a little more than not filling during the day, etc...
Maybe ask if you can start with less than 2000 and build up to it (it's pretty easy to reprogram the machine so it shouldn't be a big deal). You might find that it's more comfortable to fill when you're lying down (I'm assume you were sitting up during your training).
I have not yet started I begin pd on Mon nite..RIght now I am on hemo ..If I gain (which is rare) it is very little..They are starting me on 1.25 bag..and I will do 4 exchanges and one fill which will stay in all day .. I am just curious.. I also wonder.. I am very thin yet they want me to fill 2000 I really think that is alot ..but I am continually told it is a small amount.. (I think this is just their protocol and they dont look at individual they are just reading from a book) I have never filled more then 1000 during training and then my stomach hurts so bad ..I feel like I did 1000 situps..
As for days..I am just curious I know if I ask them they will tell me no not an option but I asked about not being filled during day and they said not an option yet I found on internet some people do do this ...I guess I will do this for the 3-4 weeks and once we do pet I will know better and be able to see if an option..
I think it would just be mentally so much better to have a day off if you know what I mean
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I know they say the more the better but..why is it ok for hemo to be 3 days yet pd HAS to be 7...why can't 6 be ok..will 1 day really make that much of a difference ..not that 'well this is what they say" have there been any studies to show if it realy effects you that bad or doesnt..I think just getting a break once a week would be good..For ex my husband and I like to go to overnight to Atlantic City once a month.now this is going to be a pain in the arse ..
I am just annoyed that they dont explain it is just ;well this is how it is type answers and I like to know why ...
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You might find the following link very helpful in understanding why it's 7 days/week. (I hope the link works!) http://tinyurl.com/PD-info
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Good question i wonderd theis myself.
Can you just bring manuel with you to AC. What games do you guys play. havnt been there in MONTHS. The only game i seem to win at is the one called ATM/MAC always seems to pay me off. :2thumbsup;
Also how many ounces is a 2000ml bag?
P&K
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Hi Paul.Karen, 2000 ML is approx. 68 oz. It's what I carry in me, which is why "I hate dialysis". lol
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This is the 2nd time that I've been on PD in my life. My first time, I dialyzed thru the Univ. of Iowa and their protocol allowed for 1 "free" night per month. I was also a smaller person at 5'4" and around 110 lbs. My fills were 2000 ml and I carried fluid 24/7. I found the one free night not to be worth the hassle of the excess fluid that would build up even in so little time. In the four years that I was on PD at that time, I don't think I skipped more than 6 nights total and then only for very special occasions. They were quite strict about the one night a month as one night per month could easily lead to one night per week.
I've been back on PD now for 5+ years and the clinic I dialyze thru does not recommend any nights off for the very reasons above. It's much too easy for one night to become two to become three, etc. When I first went back on PD I asked the doctors if I could be "dry" during the day. Although this wasn't how they normally prescribed the treatment they were willing to give me a chance on the condition that if my PET test and monthly blood tests showed that I wasn't getting adequate enough dialysis, I would agree to carry fluid 24/7. So far I've never had to be switched from my initial prescription.
Because I've had peritonitis several times in the past, I'm a very slow exchanger. Therefore I do longer dwell times and have an overall treatment time of about 13 hours per night.
Because PD is such a slow and gentle process, much more time is required to accomplish the same thing that hemodialysis can do in fewer and shorter sessions. The trade-off is the luxury of dialyzing in your own home, on your own schedule and with fewer, if any, fluid and dietary restrictions. Once you've had some time to establish some sort of schedule, I'm sure you'll find that every night dialysis just becomes routine.
For a short overnight trip like you were mentioning, I'd probably dispense with the hassle of taking the machine and do several manual exchanges instead. I always figure I can make up any missed exchanges with one or two extra the next day. That would be tough to do if you skipped a day entirely.
I know there is at least one other person on these boards who does not do PD every night and I hope he checks in on this thread. In his case, I believe that he might be retaining more kidney function that most of us.
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Thx Jen and YIKES i hope i can go dry :-( Thats alot of liquid jeeeezz
And hello MISSis,
that was a formative read thank you :clap; I am soon to start PD.
Although just earlier today i was told that it is false about the fluid/food restrictions.?????
I quess it all depends what books you read and or websites you look at.
Time will tell
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Paul, you're still confusing (I think) peritoneal and hemodialysis. Very different animals. A peritoneal catheter is NOT the same as a permacath for temporary access for hemodialysis. Missis' answer is correct on all counts including the part about fewer restrictions.
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Hi Monrein :waving;
Ok i got it figured out now (i think) in other post you respobnded to i was referring to a PD cath. As i was in this one.
Thanks for helping me figure it out :clap;....
P&K
I will be doing the peritoneal route and hopefully will never need a Permacath.
But also think i should get a fistula in case i get an infection in the peritoneal cath. To avoid having to use a permacath...
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I don't have a working fistula. I had one put in my right wrist when my kidneys first failed. I was very young and so sick that I wasn't really even aware of what was happening around me. If anyone would have thought to ask, I could have told them #1 - I'm right handed and #2 - I didn't want to dialyze through my arm. Because my failure was abrupt I had a shunt in my lower right ankle area. Although dangerous from an infection standpoint, I loved it because there were no needles involved. But this was a short term solution so instead of using my fistula, I had a gortex graft placed in my upper left thigh. I don't think I've ever seen anyone else who dialyzed this way but it worked for me for the 14 months I was on hemo before I got my first transplant. Sometime during my transplant, both my fistula and graft clotted off and no one seemed too concerned and nothing was ever done to try and repair them. After the 1st transplant failed, I opted for PD and waited 4 years for a 2nd transplant. It lasted almost 16 years and I've been back on PD for 5+ years again. No one has ever mentioned in either time that I've been on PD the need for having an alternative access. I've had peritonitis several times over my almost 10 years of PD (one serious bout about 1 1/2 yrs ago of Pseudomonas) and had to have my catheter replaced only once and that was during my initial 4 year stint on PD. Even with the Pseudomonas the infection didn't travel up the tunnel of my catheter so I didn't have to have it removed and continued to use it throughtout the infection and follow-up treatment.
I think I'll ask on my next monthly visit just to see how the doctors feel about this but I've never been too concerned about not have a 2nd access.
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phew so many here have been through so much......
I quess i was under the impression that if you got peritonitis that you couldnt use the PD access anylonger. You have shown me this isnt correct. Sadly you been thorugh it a few times.
I still may try for a fistula just incase. At least if i need it it will be mature and ready. (hopefully).
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Being a PD patient, I'll admit that I don't know much about fistulas. Sorry if this is a silly question but how do they become mature if they aren't used?
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This is a good question.
I think/thought they just matured overtime and while healing. But i truly have no idea..
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Being a PD patient, I'll admit that I don't know much about fistulas. Sorry if this is a silly question but how do they become mature if they aren't used?
Fistulas mature as the arterial blood pushes through the vein and the increase in pressure gradually enlarges the vessel. Particularly in the case of forearm fistulas there are also some squeezing exercises that can help to build up the vein. In the upper arm some light weights are recommended by some although this is not universal. My surgeon for instance said no need, just give it time. Once you begin to use the fistula, it can still be a bit sensitive but as we use it it toughens up considerably too.