I am currently on pd home dialysis. I felt as if it had stopped working and my Dr recently confirmed this. I have severe lower calf edema. It’s red spotty, itchy and dry and very tight. I am starting the cycler on Monday. Has anyone else had manual exchanges stop giving them proper fluid removal?
Pd home changing to cycler severe edema. - Kidney Dialysis
Pd home changing to cycler severe edema.
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LeslieK
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Never had this problem have you tried maybe using red bags? Or maybe more exchanges throughout the day?
Hey Vacuumnerd,Thanks for responding. I do red bags. I love them. I also do isodextrin which is a longer dwell, red strength but with no calories or reabsorption. Are you on the cycler?
No but when I did PD I was always on the cycler. I did it when I was sleeping. It was the most, “Normal” I ever felt during my dialysis journey.
Since i will be starting PD in July, and trying to gain as much info as possible, did your doc ever figure out why your cycler stopped working. Was it a technical issue with the cycler, or some other issue? Did your doc suggest a different cycler, which one were you using?
Hi. I’d be happy to help with any questions you have. I’ve been on home PD for about 7 months and I learn something new daily. It’s been trial and error and sometimes bumpy. It’s a lot to be honest. So, I started doing manual exchanges by choice. It wasn’t working as well as I needed for severe fluid overload so I had to switch to the cycler. Nothing is wrong with it technically. It is called the liberty cycler.
Hey, thanks for the reply. I've got a thousand questions, but I won't overwhelm you 
I've been on this forum for a while now, so you would think I have read and know all i need to know, but I'm sure there still lots of stuff I do not know. So let me start with some small practical stuff. I've been doing the plant based diet for a while now, and it helped some, but obviously is not going to keep me off dialysis forever with an eGFR of 5.28 currently. I've heard that after you start using a cycler, it pulls off a lot of protein and you have to greatly increase your intake of protein. But meat, like chicken or beef that has lots of protein still has lots of potassium right? So how much meat can you eat on pd and not have your potassium shoot through the roof? We'll start with that one which has been on my mind for a while, then go to the next question which will be more cycler specific. Thanks a bunch and just respond as you have a moment.
Yes, you do need to incorporate protein into your diet and blood tests will confirm if your levels are high, low or normal which you probably know this. My levels are normal and I don’t eat meat really. I have a problem with high phosphorus which now I have to take phosphate binder pills after every meal and eat calcium Tums too. Those levels when high can cause calcification in heart and arteries. It’s been difficult to get the phosphate levels down they move slowly. The cycler has to be pulling off stuff we need. I feel dehydrated and tired after it. And it can cause cramping. Not super helpful answer.
Hey, your answers are VERY helpful. So you don't eat much meat to keep your protein high. That's good to know. I was worried about having to eat to much meat to keep protein levels up after hearing that PD pulls off a lot of protein. Now about phosphorus. That is the ONLY thing that is high on my latest labs that I got last week. My potassium is fine, my sodium is fine, but phosphorus was 6.4mg/dL H (normal it says is 2.4-4.7). The issue with phosphorus is that almost NO food labels list phosphorus, so it's like impossible to know if what I'm eating contains high phosphorus or not! What does your dietitian (assuming you have one with PD), say is the main culprit for high phosphorus? I don't do dairy or meat, so there's got to be something causing it. Second. Do the phosphate binder pills have side effects to watch out for or cause other issues down the road?
Phosphorus is high in processed foods. So, fast food, boxed dinners/frozen meals, pop, nuts, lunch meat. Fruit is okay. Some other meats and cheeses. The binders pull out the phosphorus Bc it’s in the protein you need to eat but then you have to pull out the phosphate when you eat protein. Ass backwards. They have no side effects that I’ve experienced. I had to teach myself alot in this process so far. I didn’t have anyone I knew going thru it. It’s ups and downs. It’s a balance that I have yet to find. One thing goes off, then next day it’s something else. The next day it’s another thing. There isn’t a set rule or treatment plan. Your body decides and then the dialysis center treats it. You go alot in the beginning but then it’s only twice a month. Sometimes I wish I could see the Dr more bc there were days and weeks I was sick and I was fending for myself trying all combinations of home therapy to fix the fluid overload for example. And the itching! They give you meds but nothing good to sleep or calm the anxiety. Just being real not trying to be negative. I try to forget this whole thing to keep a bit of my normal self before this kidney failure started.
I was nauseous/vomiting, swollen, probably toxic, exhausted, high blood pressure of course and anemic when I realized dialysis was coming. I was taking a bunch of lasix but it stopped working as well and I noticed a decrease in output so those were my signs.
Yeah, I cut off processed food a couple years ago, which I'm sure helped, but I'm sure there's something I'm still eating that has phosphorus in it, just don't know cause it's not listed on the label. I'll have to do a tad more research. But that's good to know that the phosphate binders don't have side effects. I dread taking on new meds cause they almost always mess up something in the process of fixing the original issue. And it sounds the same with eating protein then having to back out the phosphates that come along for the ride.
I really appreciate your being honest about your PD trip, that things happen, one thing one day, another thing another day, that you have to deal with. It helps to know what to watch out for, so let me know what some of those specifics are if you feel up to it, but as you say, everyone is different, so I may never experience some of your specifics and you will not experience some I end up having to deal with.
So far, with eGFR at 5.28, I'm not feeling nauseated, not swollen, blood pressure is ok and doc didn't say anything about anemia being an issue last week when I saw him. So I guess I'm going into this in fairly ok condition. Just the Polycystic Kidney Disease has run it's course and my kidneys are full of cysts and not functioning any more.
So is the itching caused by the high phosphorus levels? I've read somewhere that that could be the source. Not looking forward to that part, but seems it just comes with the territory.
I'm hoping if the doc isn't available, that the home nurse at Fresenius will be fairly available for calls or emails when issues arise. I assume that will be different depending on the staff from center to center. I'll find out as I get in to it just how responsive they are.
Hello, when I was on PD, I was giving protein supplements like Nephro and there is also a flavored protein gel that I was given as means to increase my protein without worrying about the increase additional minerals. These may be somethings you may want to look into, if that's your concern?
Hey, thanks for the info on Nephron and the flavored protein gel. So the dialysis center provided those? Or you had to buy them somewhere?
I use ga, high protein shakes, and powdered protein in water. Just make sure they don't have creatine. Some have an excellent list of amino acids. The kidney center supplies nephro (which is not low sugar), and low-sugar syrupy-sweet protein shots, which go down easier with water, juice or a smoothie. Protein bars, help, too.
I'm searching for "ga" high protein shakes, can't find a source. Is that the brand name?
I have used Glucerna, protein powder, Boost,and generic brand protein shakes. There are plenty of large dry protein mixes in the muscle building aisles Walmart. Some are are whey or vegan, and some have good levels of amino acids.q
You can find many food list detailing the amount of phosphorus, protein, potassium in foods, as well as from your kidney dietician. As for itching some of you have mentioned, be sure to have your doctor check to see if it is doe to phosphorus, allergy, or final infection. I itched for 10 days, then ended up in the hospital for 5 days getting rid of the fungus. 2 weeks later, I ended up with a silent, but serious pneumonia without a cough or runny nose.
Also, I'm looking at the Baxter Amia cycler. Is there a reason you chose the "liberty"? Just curious if you had a reason or if they even gave you a choice. I'll be using Fresensius center and they are having to special order the Amia.
I didn’t choose the liberty but I do go to Fresenius too. I think that’s the brand they are familiar with to train on.
Yeah, my local center had to order the Baxter Amia and get trained on it, so they can train me. I was surprised they let me choose. If you ever want to switch, here's a page with a video showing how it works:renalcareus.baxter.com/pd-p...
And I know doing the cycler is not going to be a joy ride. It's one of those options, of those out there just to stay alive, so I guess I'll see if it's worth it once I'm on it, or if I decide to opt for a different path. I'm a wimp when it comes to pain, so it won't take many nights of cramps to make me switch paths either I have a feeling.
I understand what you mean about the different path. I’m with you. The cramps are avoidable. It’s not painful to be on dialysis. There are some lower abdomen cramps when the PD fluid is done draining but it’s not unbearable and maybe you won’t have that.
I really appreciate your notes on everything. Wish you had had some folks who were on it to talk to when you started, like you're helping me (and others who read any of this). I know, there's no way to know if I'll have the cramping or not. Will just have to wait and see. Oh, do you have any advise as to what to ask or tell the surgeon as far as the catheter placement in my tummy is concerned? I worry out local surgeon might not be super familiar with the process and put it in the wrong spot or something (yes, I have some anxiety as well, can you tell?)
I live near Cleveland Ohio so I’m lucky to have the Cleveland Clinic specialties near by. I’m kinda young so they asked if I wanted the catheter placed lower on the left side where it isn’t visible in a bathing suit. It was laparoscopic which I found out after I woke up. I had several incisions all over my abdomen that were glued shut and left small slit scars. Whatever. It wasn’t terrible in terms of soreness during recovery just difficult sitting up out of bed the first few days. I was most anxious about infection. Keeping the area around the tube and anything else very sterile. They talk about peritonitis a lot. You have to be very careful and clean and cover the site. And every exchange is sterile and you really need to be following all the instructions and don’t cut corners. You can get very sick. The abdominal lining and peritoneal is a sterile environment. One germ can cause infection. They show you hand washing, bleaching machine every time, bleaching your table where you have your gauze, tape, tubes etc. A secure room to do the exchange set up away from family, pets, even open air vents. I know. Don’t worry about the surgery. It’s more a procedure placement. It’s quick and is general anesthesia. Pain meds after in the hospital but they didn’t send me home with any.
That polycystic kidney disease must be hard. That’s good you aren’t having severe symptoms. Yeah, I lived fine with a low GFR. I kinda wonder if I would have been okay without moving toward PD.
Yea, high phosphorus levels cause a crazy itch. And the extreme swelling caused itching. It’s like surface level dry skin itch but also like a internal itch that doesn’t go away with topical cream.
Oh wow, this is some good detail. So I plan to start the manual exchanges in the "home office" where I work that's located in my bedroom. So I need to tape of the vent that's just over my work space? And the one above my bed as well for once I start on the machine? I assume the ceiling fan will also be a no-no?
I think I can handle doing the bleaching and all that since yeah, I've heard stories about how infections are terrible and very difficult to get rid of. But it's good to be reminded a bunch of times, just to make sure. What kind/brand of antiseptic wipes do you use? Or do you just use regular bleach and a paper towel on surfaces?
And that's good that the surgery isn't too bad. Hopefully mine will go fairly good. I assume the small scars were where they made an incision to put a camera so they could see where they were putting the catheter???? Would that be right? I hadn't thought about them needing to do more than one incision. Are you actually planning on going swimming this summer? Just wondering if that's realistic. Imma dude so I guess I won't be picky where they put the tube in, just want it to work with the least amount of issues down the road if that has anything to do with where it's placed.
I found a document on the phosphorus content in food yesterday. I'm going to start paying attention to it since labels don't say. Boy, by the time you subtract those foods that are high in sodium, then subtract those high in potassium, then subtract those high and with medium phosphorus, looks like I'll be like a person on a Survivor episode, living off plain white rice and a few select fruits and white bread. I think I found my culprit from these last labs though. It's swiss cheese slices. They're lower in sodium and potassium than other cheeses, but seems they contain a fair bit of phosphorus, so I'll let those go for a while and see how my next labs work out. There goes my last dairy product. I may substitute with creme cheese once a week or so. It seems to be the least harmful dairy product. I don't itch now, but I'm sure that's in my future if I don't get that phosphorus number down a little. I got an email recently where AAKP is doing a survey on itching:
"AAKP is pleased to collaborate with researchers on a Burden of Illness study amongst dialysis patients who experience mild, moderate, or severe itching."
Here's the link from the email to the survey that pays $50:
surveys.globaltestmarket.co...?
Hey. I tried the survey link thanks but it was closed. Yes, so when you are connecting your catheter you must have the fan above you turned off. Once you are connected it’s fine to have on.
You plan on doing manual exchanges? With the iv pole and bags? I did too for the first 6 months but the cycler works much better at pulling fluid off since it’s continuous.
I use the medical bleach wipes they provide in the delivery for wiping surfaces and the machine. I saw another person post a great response about the amount of boxes to expect. It’s a lot. Like a room full of 40 boxes per month.
Stay away as long as you can. I promise you that this sucks really bad.
Bummer about the survey, Oh well, maybe another will come along.
Ok, on the fan off when connecting. I'll start with manual exchanges like you did, then switch to the Baxter Amia (that's what I've requested anyway) after that. So I'll be following your plan pretty much.
Oh wow, 40 boxes. Yikes. Oh well, I'll just have to make room!
I've put it off for almost 2 years now while my eGFR went from 11.5 to currently 5.28 during that time, and will keep putting it off as long as I feel halfway decent. The doc just keeps throwing warnings over my head about having to do "emergency" dialysis if things go south in a hurry. Hard to tell if he knows something I don't know about my condition, or just wants me on the dialysis gravy train for himself to get the federal money coming in. I know it won't be any fun.
Are you working on getting a transplant? I'm still undecided about all that. Figure I'll get dialysis up and running when the time time comes, then look into all that.
Your own pool is fine. Once your tube site heals and you keep it clean daily. The nurses will let you know when it is healed and okay to go in the pool. For yard work, just cover the tube insertion on your stomach with the sterile gauze and tape they provide. That will keep it covered from dirt and debris.
Emergency dialysis wouldn’t be good. You would be symptomatic and most likely require a emergency port in your chest. Ehhhh risky for infection. Planning for the catheter placement surgery would be the best. Don’t slip down a messy hospital path.
I thought the transplant appts were a lot at first but I am just now scheduling some evaluations appointments. Maybe try that and get on the list. If you have a living donor it would be quicker. You could potentially avoid dialysis all together and go right to transplant. Dialysis takes up a lot of your day. It’s not right. It’s mentally weird and physically messed up.
It is a good idea long-term to start dialysis before you completely stop urinating. Continuing to pass urine is better for your health, well-being (not having so much fluid and edema) and looking like a better candidate for a transplant
Oh, you can’t swim unless it’s your own chlorinated pool or in the ocean. No hot tubs either. Or no lakes.
Ahh ok. I have a small chlorinated pool in my back yard. I'm sure the home nurse will give me details of what I need to do if I want to go cool off on a hot Alabama afternoon like we're starting to have! Gonna be mid nineties next week. I'll also need to ask about doing yard work. How to keep everything "clean" when digging in the dirt or mowing grass and all that regular stuff I do. I have images of the neighbors staring at me while I run around the yard doing things in a hazmat suit 
The phosphorus will continue to increase even after starting dialysis, dialysis does not remove it and thats why you will most likely need a Binder... Meat is naturally high in Phosphorus....I had problems with taking it at first ( gassy...bloated feeling...sometime slight nausea)..Then my PD Nurse explained how to take it...She said to take a small bite of your food and then swallow you binder with a drink of fluid...give it a minute or so to "explode"" and then finish your meal...no problems now..
As far as itching...I think it has more to do with fluid retention than Phosphorus...the veins and arteries get engorged with fluid and become inflammed...I have found an ice bag works wonders to soothe that...got a be careful with the salt...Aveno Oatmeal lotion will also soothe the itchy.. also be careful not to take too warm of a shower...and i always rinse off in cool water when I am about ready to get out...just pat your skin to dry off....avoid rubbing
oh wow, that's a great tip on taking the binder. Thanks! Adding that to my PD notebook. Same with the tips on itching. Got it.
You are so studious... I think you will do great on PD...They will teach you to do Manuel's as well as operating a Cycler...After learning the Cycler I do while sleeping I would never go back to Manuel...but need to know how to do it in case of power outage or Cycler Failure....Manuel is just so time consuming....I hook up to the Cycler ar night...wake up in the morning and most days my Treatment is done...I unhook and the rest of the day is mine...and I feel good...love it !
I hope I "adjust" to life on a cycler as well as you have. I have this image of being nagged by this machine all night when I turn the wrong way or something And being a natural born wimp when it comes to pain, I'm definitely not looking forward to "getting used to" the drain pain, which I hear can be pretty bad. I assume that pain comes at the end of each drain, which would be several times a night, right?
The only time I feel any drain pain is the first initial drain of the night...and my PD Nurse put me on a setting they call Tidal Wave...I barely even notice it all anymore...If it does get intense you can pause your transit set for a few moments...they will show you how to do that.
The initial drain us only about 1 or2 minutes...sometimes less...then it fills your belly with that warm water and I find it hard to stay awake...usually snoozing before the first fill.. I sleep better than I have in 20 years
You are making this sound way too easy
I have been on PD with the cycler for a year. I have not had any pain but I get alarms during drains because my catheter is placed in such a way that sleeping on my side, either side, causes alarms. I am a sound sleeper who has always slept on my side. Consequently, I roll over to my side during sleep. The alarms wake me up. I'm not getting enough sleep and my days are plagued by sleepiness. The leader of a kidney support group had the same problem when she was on PD. Her solution was to sleep in a recliner, preventing her from rolling over to her side. I'm going to try it. My nephrologist and PD nurses are all encouraging the experiment. I'm impressed that you are feeling okay at such a low GFR. I waited until mine got down to 7 and my fatigue was just too much. Good luck to you in this journey. You are clearly someone who intends to go into dialysis well informed and prepared for whatever comes your way.
Hopefully you are a side sleeper...have them put your exit site on the side you like to sleep on...make sure the tubing is laying unobstructed from your bed to the cycler...which you should try to keep the cycler the same height of your bed...and your alarms will be few and far between...like I told you previously, it is like a car, it teaches you how to drive it...lol...
I hope mine is like a self driving Tesla
When you say the same height as the bed, do you mean the top of the cycler is even with the top of the mattress, or can the cycler sit on a night stand that is even with the top of the mattress? That's sorta what I had planned, if it will work.
A nightstand the same height will work fine...it just helps so the pump doesnt have to work so hard...My Clinic told me alot of times people have trouble with their cycler is because its sitting to high or low..I think they are correct...It will take you a few months to learn what's what...then it will become routine..I am just thankful I am not sitting in a Clinic watching mine and other peoples blood move around...dont think I could do that....If I do something while I am sleeping I dont feel like it encroaches on my Life much...have to sleep even if I dont have kidney disease....plus I dont have to run around full of water all day...emptying and refilling every 2 hours is so tedious...constantly watching the clock
Definitely gloves if handling dirt, shower after yard work. Soak short sprayer with water and vinegar.
Oops-I meant shower sprayer.
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