Ok, troops. I would like some info. I met with my Neph today. My numbers are great. Phosphorus was at the upper end, but I expected that after Thanksgiving
Now that my hernia repair surgery is getting all healed up, looks like I'll be back one the PD train the week after Christmas.
So my question is. Has anyone with good numbers (hemoglobin, potassium, phosphorus, etc) ever tried "part time" Peritoneal Dialysis? Meaning like 3 days a week, or 4 days a week, rather than 7? Let me know, I'd like to build a case to talk with my Neph about this idea.
My reason for wanting to do this is so my Peritoneal Membrane will last as long as it will last. If starting off part time would extend it's life, that would make me happy. Supposedly the average PD journey is 4-5 years at my age (69). If I could stretch it to 6 or 7, that would be idea.
So let me know if anyone has ever been on part time PD before, and how did it work out and for how long before going to 7 day. And what was the reasoning for doing part time.
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RonZone
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Hi RonZone!!! Long time no see. How are you, I hope you are recovering well from surgery! It’s good to see you back! I haven’t heard anything about partial PD, I guess that once you are referred to PD is every day without skipping it. Here in the States we have cases of people being in PD for 45 years, in our Dialysis Clinic there was a patient that was on PD for 20 years. What makes your peritoneum last longer is to avoid constipation, eat a healthy diet and take your medication.
Hey, thanks for the welcome. I'm doing just fine. And yes, recovering well. 45 years on PD??? Are you sure? Being that I'm 69, I'm doubtful I'll last 45 years Ha! Even 20 would be a godsend. Avoiding consitpation. Now that's a trick, what with the phosphate blockers trying their best to plug me up. And eating healthy. I've been doing that, but once I'm on PD, they're saying I need to eat a ton of meat and stuff with lots of protein. So that's going to be a trick to eat "healthy" while adding tons of protein back in. Things that are high in protein are also high in phosphorus and/or potassium. still searching for a high protein source that has no or extremely low phosphors and potassium. Let me know what you know about that. And I'm definitely taking my meds. So if I can get at least 6 years out of the ole lining, I'll call it a success.
You may not need to worry too much about potassium, only phosphorus. PD takes out approximately 40 mmol potassium daily, which is about the normal potassium intake. But it can't remove phosphorus. My hubby eventually had to go on phosphorus binders to keep it from going over the top. Unfortunately, phosphorus is in everything, just like potassium. Sending positive thoughts that you can arrange to do PD intermittently - it's always nice not to be hooked up on machines.
Yeah, i wasn't on the machine long enough and didn't get to do manuals long enough to even know how it will affect my output, so it may be a month or so after I start (the week after Christmas) PD to really know what my levels will look like. I may start with full blown 7 days a week and see how my numbers look after a month, then if I can go "part time" I'm going to look at that option. It would really help in my efforts to be primary caregiver for my dad rather than forcing the nursing home situation on him cause I'm totally machine tied every night.
Ron I have never heard anyone do part time Peritoneal . If you talk to your dialysis team about it and they tell you that it possible I woukd like to hear the pros on it everything I read there no part time. I will be joining you in January I went to kidney doctor today he said I’m at 8 percent so after the holidays it is time . I hope I can have a good of attitude as you do on it.I know my doctor said it will be every day I will have to do it.
Ahh so you will be joining the PD train. I want to hear ALL about your experience. I'm hoping it will go extremely smooth (much unlike my own journey so far, ha!) January seems to be as good a month as any to start since it's too cold outside to do much of anything else anyway. I'll let you know what folks say about part time PD, if I find anyone who's doing it anyway. I'm at 6% and I feel just fine, no symptoms, so that's why I was wondering if I could stretch this out and just do part time for a while before going whole hog once symptoms start.
Yes I know people who don't do PD every day. If you get a good KTV score then they can look at reducing your treatment. For example having the weekend off. In my experience in the UK you have to be proactive and push for a reduction as they don't automatically suggest it even if you had a really good score. Another important aspect of maintaining your membrane is the strength of the fluid. The low strength one is in the yellow bags so ideally try to get on them.
Hey, this is good news that I can use, if you know of someone doing part time, let me know if they would be willing to share how it works, like as you said, with weekends off. Or do some do every other day or anything like that. Just whatever you know. As for being proactive. Oh boy, anything you do within the Dialysis industry you have to be proactive or else they just put you on cookie cutter, one size fits all plan. Makes it easier for them to get their thousands each month it seems. It is a for profit business after all. Currently I'm on the yellow bags. Figured that out during training. Tried green bag once and it gave me bad cramps. Nurse said it was pulling too much off. Hope to stay on yellow for as long as I can. That's good info.
Would you mind saying what the reason is for doing 6 days instead of 7? And how did you get the dialysis center to agree to that? Another reason I'm asking this is there are some nights I have to deal with my dad's dementia and it just won't be possible to hook up those nights.
Based on my numbers and lab results, my nephrologist made the decision. My pd nurse told me that I can connect and disconnect during the night to take my dog out but haven't tried that yet.
Interesting that your neph suggested that. I'm gonna run this idea by mine and see how it's received. I understand that doing PD 7 days is closer to mimicking the actual kidney function, but for these first few months, it would help me to do "part time" to deal with my dad's issues and to help preserve my Peritoneal membembrane (my theory). At my age, it will wear out faster for me than for a 35 year old, so I'd like to get as much mileage out of it as I can Thanks for the response. I assume the lack of response from others means that there's a very limited number of folks (other than you) doing part time PD.
When did you find out that your prescription was? I've yet to do training (probably first flush in Feb 2) and my neph is out of the country and I don't know when he'll be back.
The only thing I know about my "prescription" is that they tried me first on yellow during training, then bumped me up to green just to try. The green gave me cramps at night, so they said it was taking too much off me, so they put my "prescription" as using the yellow solution (1.5%) and that's where I've been ever since. I never even tried the red box. It's growing mold sitting in the corner The nurse will help you figure all that out. The doc didn't have anything to do with it. I just see the doc once a month and he looks at all the numbers and grunts and that's about it. The PD nurse does everything else.
Oh and I asked the "team" about doing part time dialysis. They said it's not designed to be used that way. But dealing with my dad on a given day when his dementia is in full swing, I will not be doing dialysis that night for sure. Maybe two nights in a row if it takes it since my natural kidneys still have function enough to go that many days without PD.
Hi RonZone! I am on PD for the last 3 years. I have not heard of part time PD. I do 3 exchanges each day with PD fluid of strength 2.5%. My nephrologist recently told me that if I stay healthy, I would be able continue with PD for 10 years. If one is lucky to have good dialysis with 1.5 % PD fluid, the peritonium layer would last further long period for dialysis. Good luck to you and take care
Hey, thanks for the response. Your bio doesn't say how old you are. Are you older than me (69?) It seems age affects how long the Peritoneal membrane lasts according to sources I've read, thus my concern with preserving it as long as possible. I am on 1.5% currently, so that's a good thing.
Yes, after completing my note last time, I noticed that I missed to mention my age. I am 67 years old male. I am not sure whether age affects peritoneum membrane functioning. It is very good that you are able to get good dialysis done with 1.5%. Let us hope that it continues for long long time. All the best to you.
Hey, so you're right behind me there. Boy if we can make this work for 10 years, you and I will have to have a celebration! I'm in Alabama, which state are you in?
Oh wait, I see from your bio that you are in India. You guys may have better Peritoneal membranes than us folks in the USA, what with all the bad food we've consumed over the years! I guess we'll just have to wait and see. Let's keep in touch.
Here PD is not popular. Most of the patients go for HD. Insurance coverage is not provided for PD as it is done in home. HD has insurance coverage. Government staff both serving and retired get covered for PD. I thus get reimbursement of expenses incurred for PD
Ahh, interesting that they don't support PD since you basically do all the work yourself, vs incenter HD. So you have to buy your own supplies, then get reimbursed? Also interesting. Is there anything that they won't reimburse you for? Like tape, hand sanitizer, gauze, Alcavis (germ killing liquid), etc.?
Well at least they reimburse you, but it sounds like a lot of expense out of pocket up front for you. Most folks would have to take out a loan for what they charge for all that stuff here in the US. And I can't imagine the paperwork!
yes, it is tough. But pulling on..Three weeks ago I was hospitalized for 6 days due to infection and fluid accumulation in lungs. Luckily the antbiotics through IV worked well on my body and I could get cured. Now I am doing well
Do you have a specific liquid protein supplement I can ask my nurse about? The protein drinks they've talked about at the dialysis center so far are high in potassium and phosphorus.
The Nephrologist I'm looking at has 250 sodium, 225 Potassium, and 170 Phosphorus. I guess i was hoping to find something with half that much if possible with the same 19g of Protein so I can have some regular food to go along with it. Might not be possible, but I'll keep looking. Thanks for the info.
My Fresenius clinic recommends it along well as Liquicell. You do have to stay within the overall daily limits of potassium and phosphorus. I usually do not go over the limits on my labs, unless I forget to take Tums near my meals.
Yeah, since I'm just going to get started again on PD next week, it will take me a couple of labs on PD to even know where I am with all this, I'm sure, so it's a guessing game on my part right now. But I figure I'll try to start as low as I can with Sodium, Potassium and Phosphorus. I can ALWAY find something to eat to increase those if they get low. Too low won't ever be a problem for me I don't think So if I can use something that's really low, then stack a half of a baked potato on top of it, I'll be a very happy camper, though I think that's probably wishful thinking on my part...
I can't find ANY information about how much phosphorus is in these. Where did you find your information that it doesn't have phosphorus. You will find that phosphorus is NOT required by the government to be listed in the nutritional information on the label, BUT that doesn't mean it doesn't have any. I've had to actually write a few companies to get the information out of them. Looking at the ingredients, especially the peanut butter chocolate ones. There's no way this doesn't have phosphorus with peanuts and chocolate In my dreams it doesn't, but in reality most likely does. So you would need to contact the company directly and have them provide the phosphorus content. The sodium and potassium and fat content depends on what variety you get.
Now for G2G bars. I'll be darned if I can find ANY information on potassium and phosphorus for these things. If you know of a source for that info for either of these, put a link in your comment to that info. This is what I found for G2G:
18g protein, 85mg sodium 14g fat
You will find that most of these types of bars are created with sports people in mind (G2G is owned by a pro baseball guy), so they're not exactly worried about kidney health when they came up with these.
Compare these to Quest bars:
200mg Sodium, 21g Protein, 105mg potassium. phosphorus 15% (that's still pretty high (450mg) for one bar based on 3000mg per day diet--800mg restriction when on dialysis)
So watch out for "hidden" phosphorus. ASK your dietitian and even contact the company is what we'll have to do. I'm meeting with my dietitian friday at 1pm and will take my full list of protein supplements with me to ask her about. I have a feeling she is NOT going to know the answer to my questions about phosphorus content other than "you would have to ask the company", at least that's the answer I expect her to give me. They seem to only deal in generalities. They leave it up to us to do the research about specifics from what I gather. I mean she knew nothing about pre-dialysis diet for PKD patients when i asked when I first became a patient last summer. I've been doing my own dietitian research and work since I've not actually been on full blown dialysis up until last week when i started back. Sorry for the long answer, but hey, you threw it out there. Ha!
I've yet to meet the clinic's dietician but when I was getting my dressing changed on Monday I mentioned my serum protein being so low, she gave me two bars to try from NuGo. The nutrition info is so tiny even with my glasses I couldn't read the label but the website shows 11g of protein, 115 mg of sodium...and in the ingredients list there is a "phos" so it has some. I was disappointed in the protein being so low.
Hey, thanks for the link! I would still contact the companies and ask for specific amounts of phosphorus. If something has chocolate in it, it's gonna have phosphorus, otherwise I'd be living off chocolate But this is a great list of companies to contact, and specific products to ask my dietitian about. But again, I really doubt she's done the research to know specifics about every product out there. There's a TON of these protein bars, so it would take some time to research each. I'll probably be eating one while researching another one just so I have a good variety available that might be better than the nasty tasting shots I've found that are high in protein, but low in sodium, potassium and phosphorus.
Yeah I found that out the hard way with the Kate Farms. They tasted just like chocolate milk which should have been a clue. I haven't tried their renal formula yet. I did order the ProT shots in Berry so I'll give them a try. I ordered directly from the company since I'm boycotting Amazon after they laid off my daughter. My credit card thanks me.
Hey, please let me know about those ProT shots! Very interested in if they're really nasty or not. Did you say you make smoothies in your blender, can't remember. You either have a Ninja blender or a Ninja air fryer, can't remember that either.
17.5g protein, 51mg sodium. I had to call the company asking about potassium. They said the 1 oz contains 9mg of Potassium and a "trace" (less than 1mg) of phosphorus.
So unless they just taste really nasty that might be an option I try. It's a little less protein than Nepro and a lot cheaper so I could actually take two of those and get 35 g protein if I needed to, with little additional sodium, postassium or phosphorus. I may see if anyone else has tried them.
Ok, just looked that one up. For the 237ml (8oz) bottle, it has 230mg potassium and 200mg phosphorus and 220mg sodium. Not bad, but not super low either. Seems they just can't make a high protein drink or supplement that's like 100 or lower in Sodium, Potassium, and Phosphorus. I really appreciate your sending me this though. I'm adding it to my list of choices. On Amazon, a pack of 24 is $92, or about $3.83 each, which isn't too awful bad especially if you compare it to the cost of meat these days!
This is the ProT shots stuff, right? Yeah, I had a feeling it was going to be like that. So you think it could be disguised in a smoothie with lots of berries and stuff? Good that it has no aftertaste. Is it sweet or sour tasting?
yes the pro t 1 ounce shot. I think yes it could be disguised. I got the mixed berry flavor so it’s rather sweet. I’ll have my husband mix up a smoothie and I’ll add it.
Ok, Liquacel seems to be MUCH better as far as Sodium, Potassium and Phosphorus. And cheaper at $2 a shot (though you need two to equal a skinless, boneless chicken breast one reviewer said, so that's $4 a meal for 32 oz of protein. I'm reading on amazon where folks say they taste nasty. What's your experience with the taste?? Reply just when you have time and thanks a ton for these recommendations.
My experience with Liquacel was during my time on PD. (which was a journey in and of itself.) I use to mix the Liquacel with light fruit juices to mask the taste. When I went over to hemo I was using the Novasource. I preferred the taste of Novasource, it taste more like a shake that came in chocalate, vanilla, strawberry and orange and had no after taste.
I think the difference may have been because due to the hemo. Although there were some PD patients that received the Novasource.
I was thinking that you substitute half of the chicken portion and use one shot of the Liquacel. PS: The supplements were provided at my center. But from reading the many entries on the site, it appears different centers have different protocols in their programs.
Ahh, gotcha, so Liquacel was added onto a diet with other protein. Got it. Yeah, we'll see what my Fresenius center offers/says. I would like to know more about your PD experience when you have time. My journey has been an odd one. Lots of starts and stops so far.
Your Clinic will most likely supply you with the Liquicel...Tgere are about 5 different flavors.. I like the Lemon. And the Apple is not too bad.. I mix it in my Bai Coconut water and its pretty decent
I love my Bai Coconut water...it has 370 mg Potasium and 65mg Sodium....in an 18 oz bottle...I have about 2 to 3 bottles a day....diesnt make any change in my Potassium readings or Phosphorus readings...but as always everyone is different so you have to watch your labs
Gotcha, I think I'll wait till I start dialysis again and see how my Potassium levels are doing, then give it a try for a month with those protein shots. Worth a try! I've made a note to chat with the Fresenius dietician about it when we meet again next month.
What is your serum ALB level. Mine has been extremely low (2.9) for the last few months. No one seems concerned but they should be given low blood protein can cause all sorts of bad things. Has to do with protein energy wasting and I haven't started yet. I'm not sure I can eat enough protein rich foods as they do not sound appealing any more.
So my "Albumin Level" (I assume that's what you mean by serum ALB level) has been ranging around 4.1-4.2 since January 2022. On January labs 2023 it was 4.2. So yeah, yours is pretty low. The healthy range on my labs says 3.5-4.8. I totally understand about having to eat enough protein rich foods. When you're not used to it (I've been on low protein for 3 years), it's going to take some getting used to on how to do it. I'm gonna be passing you ALL the notes I get from the dietitian that seem to have any helpful info, and from my own experience. And others will share on here too. But it seems that it's going to require a definitely change in diet. Hey, you got that Ninja blender now, right? Time to smoothie it up with added protein powder and stuff! Again, I'll send you ALL my research so we can chat about each option so you have more than a few protein sources to choose from. And please share any more than you find!
Hey, Ron! I went through inguinal hernia repair in April after springing a leak while on PD. This is what my team did: They put me on night-time only PD. If I had to use the bathroom, I had to wait until I was drained and then paused my machine, disconnected, etc. etc. After surgery, I went exactly 6 weeks with no PD (based on my numbers, they judged I could handle it) and I think I had some nutritional restrictions, although I cannot remember which exactly. I had to do bloodwork weekly and was monitored closely by the team. When I resumed PD dialysis, I did so only at night. I did not carry any fluid in my belly during the day. This approach may potentially be a better option because you are getting rid of toxins on a daily basis, which is the whole point of PD, right? ... Wow! Just reading your comment to Erifre! I was NOT encouraged to consume large amounts of protein. For a phosphorus binder, I used a 500 mg Tum prior to meals. Good luck with whatever route you take!
Oh wow, seems you and I have followed similar paths. When I resume PD, it will be on the cycler at night only (if I can get the thing to let me sleep instead of alarming during every drain! Yeah, I understand that doing it daily is ideal, I've got two reasons I was thinking part time to start with might be a good option to try since my numbers are doing as good as they are (well except for the creatinine, serum level of 8.9). One to make my Peritoneal membrane last as long as it can (I don't get in my car and floor it every time I drive somewhere, I take it easy on it so it will last a while). The second is since I'm primary caregiver for my 95 year old dad, I sometimes need some nights to deal with his dementia issues, especially now, during the short winter days when he can't get outside much to stay centered. We'll see what the doc says about the part time idea, just through say March or April till the days get warmer and longer, which is when he does a lot better. So you weren't encouraged to eat a lot of protein. Interesting. They were telling me I would be eating like six eggs a day. Oh but don't get constipated. Do what???
Hi Ron. I see your issue. God bless you and your dad. I did home care through college. About the protein, yes, I had very different advice. Failing kidneys don't do well with a lot of protein - at least this was the historical advice. But, perhaps your situation is different, in terms of numbers, etc. You must require strength in caring for a family member. Hey, if you get to eat protein, so much the better! It may well be that your clinic has embraced the news on keto working for kidney disease. Oh yeah, before I forget... You know people with pkd have connective tissue issues, right? Hence, hernias.. 😌
Oh hey, sorry if I confused you. I'm on a very low protein diet until I start dialysis, then once i start dialysis, that's when they want me to really ramp up the protein as PD drains off a lot of protein they say. Connective tissue? Nope, did not know about that. fill me in when you have a moment.
Lol I get a stomachache if I eat too many eggs so it's like 2 a week. I'm lactose intolerant as is my husband so dairy is out. The thought of eating a steak or hamburger gags me.
Well, there's a bunch of protein sources out there, you will just have to find combinations that work for your tastes and labs. Hey, any steak you don't want, send it my way Ha! I mentioned smoothies with added protein, let me know if those are not something that might work. We'll get very specific about all of this in coming days/weeks as we try this and that. I'm just starting this myself, so I'm still in experimental phase for all of it. Still searching for that magic protein source with ultra low sodium, potassium, and phosphorus that tastes delicious. I think I'm dreaming that that product is out there, but the search continues.
Your k/tv number will be the guide for the Dialysis Rx...it is also called Clearance....it needs to be above 1.7...mine have always been in the 3's...my last one was 3.76 and my PD Nurse thinks we should reduce my treatment plan...she will talk to the Dr and let me know at my next appointment....she says there is a type of Solution that does not have the Glucose in it...You manually fill up and sleep with it all night and dump it in the morning and your done...I hope I get moved to that...lots less boxes to deal with and no machine...easier to travel, but we will see...
Oh wow, I'll have to ask about that as well. Tell me again which Dialysis center you use? Mine is Fresenius. Not sure they offer that, but it's definitely worth asking about.
My Clinic is called US RenalCare...they use alot of different products there...but most is Baxter...They take excellent care of me...They always want to know how I feel about things and are always willing to try new things with me. I feel like they always listen...give their best advice...but always let me make final decisions
IYeah...dont let them do that to you too much...They don't walk your Journey ...and although they are trained and can guide you, no one will take better care of you than you...I think people handle diseases like Kidney Disease better when they feel they have some responsibility and control over it...and although we don't know all the technical ins and outs, we probably do more Research than they do and we have opinions....This is Our Life....
Yep, I've had to stand up to em before on some issues. When I came off dialysis (after one week) to get my hernia repaired, the dietician wanted me to continue the high protein dialysis diet. I told her I was not going to do that since I would not be on dialysis for 6 weeks. She said I would be going against doctors orders. I said. "Ok, and?" She didn't like that very much. And the PD nurse actually suggested I not get the hernia fixed since it would interrupt my dialysis. I just let her know I was getting the surgery done, and that was that. She didn't like that much either. So it's been a bit of a struggle to get them to agree with some of the most common sense stuff (in my opinion). But I don't back down if I know something is right for me. We'll see how this goes with my request for Part time PD once I start back on PD next week
Dang...they wanted you to forego hernia surgery....good greif...and I agree you should absolutely go back to your kidney diet until you started dialysis again....shocking !..I would start looking for a new Clinic..that is almost bordering Malpractice
Our Clinic is also US RenalCare, and hands down Baxter is a great choice!, CS is really helpful and Baxter Global Services helps you a lot when traveling out of the country!
I found that US RenalCare has a clinic about 40 minutes from me. I am going to check into it to see what options they might offer. Thanks for this note.
My PD Nurse told told me, but I don't remember...I go for Clinic Checkup next week...I will try to find out more...I believe if my K/tv is still good in January they may try it on me and I will have more Info then...afraid to get too excited about it yet tho...I really miss sleeping in my bed...lol
Because I live in a two story home...and all my supplies and cart are on the main floor....so I just plop down on my couch...which is very comfy...And don't make my Husband lug those heavy bags up and down the stairs...he is old too..lol
Looking at this, it says this is for folks on 4.25% or 2.5% dextrose solution. I'm currently on 1.5%, so this might not work for me, but I'm sure gonna ask about it:
Randomized controlled trials showed that Extraneal PD Solution improves long-dwell net UF compared with 4.25% dextrose in high or high-average transporters treated with APD1 and compared with 2.5% dextrose in high or high-average transporters treated with CAPD.
Still trying to figure out how this is used. Seems it's for use as "manual" exchange only. Not for cycler use, not sure. And it seems to be replacing the fluid you put in and leave in overnight when doing manuals during the day and then leaving the solution in all night until you start the 4 hour manual exchanges the next day using the regular solutions. Not sure. Let me know what you know about it.
My daughter's numbers were at a good enough level that we were allowed to go down to six days a week on PD dialysis to give her a break and just reduce the stress on her body whenever possible. She's a toddler so any reduction in stress is preferred. We've been on dialysis three months and went to one day off per week about two months ago. The fill volume we use for her cycles is below what her peritoneum cavity "could" hold. We've talked about going down one more day of dialysis, if her numbers were to improve even more on a higher fill volume for each cycle. But she seems uncomfortable with the current fill amount amount so we haven't increased it. TBD on another day until she's more comfortable. For now, just one day off is really nice.
I know that probably a nice breather for your daughter a day off and for you too . To see her have a day where she can just be a kid. Dialysis is hard enough bring an adult I can’t imagine being a kid having to do it. I imagine this is such a hard journey for both of you. Sending hugs and prayers to you and your little one🙏🫂🫂🙏
Agree with Beachgirl. Kids are extremely resilient, but this has to be hard on your daughter. What does her Nephrologist say concerning transplant at that age?
I see where you just joined today. Please create a post and tell about your situation to the group whenever you feel comfortable enough. LOTS of knowledgeable people on here. You are not alone. Several caregivers on here as well.
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Sending positive thoughts that you can arrange to do PD intermittently - it's always nice not to be hooked up on machines. 
from PD to HD
My 1st week of PD at home
