Since that post, when I stopped doing manual PD because of the extreme lower back pain I was experiencing, I had visits with my PD nurse, my Primary Physician, the surgeon who put in my PD catheter, a physical therapist and a back surgeon, then back to my nephrologist and pd nurse. The back surgeon said that the pain was not from a back issue (after checking my back thoroughly and looking at new MRI and x rays). He said it was probably caused by the PD fluid putting pressure on nerves that run in front of my tail bone. The pain only happened when I was moving from a seated position to a standing position and was like I was poked by a bolt of lightening in my lower back.
So with that information, my PD nurse and I came up with the idea of trying using a cycler, with dialysis happening while I am lying down, not sitting. So we set up training, got that done one day, and the next day, October 26) I tried one short 2 hour session with half the normal volume (1000ml) of fluid. After the cycler (Baxter Amia) drained out the fluid, I stood up and felt no pain. The next day, I tried 4 hours with 2 exchanges, the next 6 hours with 3 exchanges. then the following night, she set a program do do 5 exchanges overnight at the same 1000ml volume. I was ecstatic to NOT feel any of the back pain experienced with manual PD. SUCCESS!
Since then, I've completed 5 exchanges per night with the same 1000ml and still experienced no pain. So the next step is to try moving up to the 2000ml volume and see how that goes, but before that happens, I've got a couple other issues to resolve.
I've developed a hernia in my abdomen, as others report they have done, and met with my surgeon yesterday and will have hernia repair surgery this coming Monday November 14th. I will have to stop PD dialysis again for 30 days while that heals, then I'll come out of the gate again with PD using the cycler.
Until then. I'm going to be posting some cycler specific questions for all you folks using cyclers, plus some other questions concerning diet since I'm going to be doing a "hybrid" solution where I will not keep fluid in me all day. I'll be draining all the fluid in the morning before disconnecting each day. And if putting 2000ml in revisits the pain experienced with manual PD, I'll have to back off again to a lower volume and adjust my diet to match this lower volume, in regard to how much protein I add.
So thanks in advance to all for your support during my journey up to now, and my continued journey going forward.
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RonZone
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Wow, Ron... so I have some questions. I do not really understand all that you are doing. I really hope you don't mind if my questions seem dumb.
So you do multiple exchanges at night? So the fluid goes in, and then circulates and then drains, and then starts that process again? Is that correct. And then you spend the day not connected to anything and no fluid? That is fascinating to me.
I was looking originally, we the blessing of my Neph, to go PD. Issue for me would be the amount of calories absorbed with PD solution. And... I do not want to give up my water aerobics class. ( Seems silly, but it is important to me.) She said there would be no way to have a catheter and swim in a water channel class. Now I am not sure I can continue with a fistula either. There is a sleeve but that's for normal water, not a fast current. And also, I was not sure that toting fluid around in my already rather large front was going to be good. My belly would be down to my knees in short order....lolol. (Oh well, matches the rest of my saggy body) But having this only at night and for HOW many hours???? Might be a good choice.
I am not hot on any of this, but reality, some day and probably sooner than later, I will have to decide. That is why really liked the detail and perspective of your posts.
Hey, yeah, my total experience is bit off the "normal" dialysis track. I'll do my best to explain, but there may be questions I have to ask my pd nurse to give an intelligently framed answer.
Yes, I'm doing 5 exchanges each night over 8.5 hours. I connect the PD tube from my abdomen to the tube coming from the machine each evening,. Then I fill and drain 5 times each night, draining all of the fluid out during the last drain each early morning (5am). Then I disconnect the tube coming out of my abdomen from the tube coming from the machine. So yes, I'm not connected to the machine and I'm empty all day to go about my business so that there's no chance that the daytime fluid might trigger the pain again. The machine pumps the 1000ml into my pertoneal cavity (takes about 6-7 minutes), then the fluid sits in me (dwells) for somewhere around 80 minutes? (I'll have to verify that). Then the fluid is drained out, and I'm filled up again. It doesn't "circulate" during the dwell, it basically just sloshes around like water in a washing machine as I roll over in bed
Now, I'm a bit of an exception here since I've got good number that allow me to do this method. I'll be increasing the fluid amount from 1000 to 2000ml after my hernia surgery on monday is healed (about a month). I won't do dialysis during that month. And some people need extra dialysis, so they will either hold some fluid during the day to be drained out in an "initial drain" in the evening when first connecting, or they will do a manual pd even during the day for 4 hours where they manually put fluid in and let it stay there for the dwell and then manually drain it out, in addition to the nighttime exchanges. You would have to see what your numbers say you need and your doc and nurse would advise on what they think your exact treatment should/could be. I also can increase the time of my treatment at night from the current 8.5 hours to 10 or even 12 hours if needed. I would simply hookup earlier in the evening and sit and watch tv or work on my laptop during the first fill, dwell and drain, or sleep later in the morning before the last drain happens or wake up and watch news during the last fill and drain before disconnecting for the day. So there are options. I have no idea why I'm doing "5" exchanges each night as opposed to 3 or 4 or 6 etc. That's just what the nurse set up for me to do, so that's what I do. I'll have to ask. Note, when connected, you can only "travel" the 20 ft distance that the tube that connects you to the machine allows. Mine allows me to reach the bathroom, but not the kitchen So no late night snacking!
As for swimming in that class, there are "waterproof" patches you can put over your catheter, and possibly you could look into a wetsuit, but you would have to get that cleared by your neph and your pd nurse. I have a small chlorine pool in my back yard that I plan to use next year, but it's not shared by anyone else's germs. There's always give and takes to all of this. Each person has to decide what to give and what method to use.
Thanks so much for all the information. Amazing. There is so much to learn about dialysis that it boggles my mind. I am on a local patient advisory committee about end stage decisions. They want to know if we have the right information to make choices about dialysis and transplant. They provided this "book" that was written for a 6th grader. I was insulted and it had really poor explanations.
Your posts have been extremely informative and helpful. Kidney education should be written and taught by peers. NOT some communication graduate that has no idea. Thank you for all you are doing.
Hey, you and me BOTH. I was really fretting when I first hooked up to that machine and put that fluid in me that first day. I did the exchanges during the day the first three days so i would be alert and know what was happening. The first time I got up, I almost jumped for joy since there was no pain like before. I can't describe well enough how bad that pain was doing manuals. Oh well you had a daughter, you know I'm crossing my fingers, that it doesn't reappear once I put the 2000ml in. If it does, I'll simply back it back off to 1500 or back to 1000 until I don't experience the pain, then increase the time or the pd solution strength.
The odd thing is, I've never had any of the "end stage" CKD symptoms. A little tired, so I'm not ready to dig ditches or anything, but I can still do pretty much what I want to do on a normal day. Since I'm in "PD test mode" using half the normal solution volume, I'm not sure if it is going to make me all of a sudden feel like the Energizer Bunny (I have never been the EB type :-). So it might be more difficult for me to feel any different on dialysis than off. I guess time will tell once I've been on it solid with full solution volume (2000ml per fill, 10,000ml per night with 5 exchanges) for a few weeks. I'll be coming off this test again starting monday when I have a small hernia repaired. I'll have to take 30 days to heal before I start up again. Once I do, I'll start with 1000ml, then move up to 1500, then 1850, then 2000 incrementally to see if my back pain returns or not. If it does, I'll have to reduce the volume back down. Hopefully doing all this lying down at night has solved the back pain issue. Jury is still out though at this point till I put the full volume in for a few days in a row come December. Getting the hernia that I've developed fixed will be as big a relief as anything. It's very bothersome, especially we I get gas Ouch!
Hey, thanks! Are you on the Baxter Amia? Even if you aren't, how did you finally conquer the cycler alarms and get them to leave you alone so you can sleep? Trying to remember what you told me before.
No, I am on a Liberty cycler. I have had a few times since May that I have had to turn the machine off. One time, support told me to turn it off and back on. It asked if I wanted to resume treatment or cancel. I resumed treatment and finished. The other time, I had to cancel. I am on a 6 day; 1 off; so I used the canceled treatment as my day off one. For the canceled one, I did have to drain the bags.
One error message I received told me there was air in the cassette. Once the treatment starts, the cassette door doesn't open till you are done. When I called support, they told me that I would have to start all over. New bags and new cassette. They took the serial number, date and other information that is on the cassette bag. Luckily I hadn't throw out the trash yet. Now I keep the cassette bag until my treatment is done.
Well it sounds like the Liberty and the Baxter Amia has similar situations as to error stuff, except in the one case I had last night, the Amia didn't give me an option to continue the treatment. Shutting down and starting over was the only option. Fortunately, since i was still full of fluid, it has an "initial drain" that emptied the fluid that was already in my peritoneal from the failed treatment before starting the new treatment first fill. I was afraid it would try to put the new fill in on top of what was already there and blow me up like a blowfish
Good tip to keep my cassette bag until treatment is over!
For manual is there a set time that each has to be done? So if I do mine before going to work at 7 am, then another at work at noon, come home at 5 and do the third, then last one at 10 pm bed time....or do they have to be a set time limit in between?
There's no set time for either manual or cycler. The instructions for manual just say that the "dwell" should be 4 hours. In my opinion, manual is MUCH more intrusive than the cycler. If I had been able to continue with manual, I would've put that fill in at 5pm, then after dinner, probably doze off and have to wake up to do the 10pm drain and fill. I need more sleep than that 10pm till 7am since by the time you do everything, it is actually more like 10:45 till 6:15. I have no idea why the "dwell" for manual takes 4 hours, but each "dwell on the cycler is less than an hour and a half???? I'm going to have to ask my PD nurse about that.
mmmm. yeah, that could be an issue, but talk to the home dialysis folks who do home inspections and see what you might could do at work. Is there a storage room that you can use? You could just throw covers over everything and as long as there's not a lot of air blowing dust around in the room, you could do things to set up your "setup" table so that it would be "clean". I've got my manual table sitting in my home office with stuff sitting all over. I do have all the stuff covered with washable covers so there's little chance of dust sitting on the stuff to get into me. I assume you work in an open office, you don't have your own small room where you can close the door? How far is work from home? I saw a story on one site about a lady who had a very small camper she pulled behind her car that she used for exchanges. Might be a little chilly in the winter, though a small propane heater could help with that. Where there's a will, there's a way. AND the whole thing about manual is just so you know how to do it if the power is out or your machine craps out etc. You can ask your boss to let you go home to do the noon exchange during that initial couple of weeks, and then ask the center to not force you to do manuals for the full month, Heck I only lasted a week before having to stop because of the pain, but I got it all down pat in that one week enough to be able to do it if I had to, so they approved me moving on to the cycler. Don't settle for "no, you can't do it that way". I didn't, and they finally agreed to work with me.
I do work in a smaller office that I share with my coworker who refuses to be vaccinated or get the flu shot and it's quite little ways from the bathroom. I have been able to work from home when needed so if I had to I could do that. Work is 40 min drive so not convenient. I do have a major concern about the size of my house which is tiny and the fact that I currently have 4 dogs and a couple of cats. I can shut the bedroom door to keep them out but my major concern is the storage of all the boxes and the fact that I live in such a remote area. I'm sure I'll figure stuff out it's just the logistics of it all and it's all unknown. I do have an appt with nept on Nov 22 so I'll be grilling him on what he can answer.
You can easily do this in your office IF your co-worker is at all cooperative and understanding of your situation. They would either go to lunch to give you the office so you can connect/disconnect, or they would simply put on a mask while you connect/disconnect to prevent their germs from getting into the open transfer set. But working from home would be the ideal if your boss would allow that for a couple of weeks. And yeah, just make your bedroom a "no pets allowed" room if at all possible. I understand dogs can come in except when you are connecting/disconnecting, but cats like to chew/play with the tubing too much and might bite it and get you infected! I mentioned once before if you might get a small storage shed for your supplies if you have the room outside, like up against one side of your house, then bring into the house just what you need. It would need a portable heat/cooling unit, but those aren't too awful expensive. Just a thought. Then once you don't need it any more, you can sell it on facebook market place, especially if you get that transplant and are only on dialysis for a year or so so it's practically new. So yeah, LOTS of things to talk about with your neph and the dialysis center folks. Talk to the social worker there, see what ideas that person has. Don't just rely on what the doc or one person says.
I remember the shed comment and brought it up to hubby so when it's time yes we'll get a shed. There's an electrical hookup in the front of the house we can use for heat/cooling as winters/summers in Oklahoma can be uncomfortable.
I wish I had a place for a shed instead of using boxes for furniture I have no doubt you guys will figure it out when the time comes! Yeah, you guys are in that zone that get's hot as blazes, but can also get really cold in winter. But hey, you don't get bored with the weather!
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So no late night snacking!
I'm crossing my fingers, that it doesn't reappear once I put the 2000ml in. If it does, I'll simply back it back off to 1500 or back to 1000 until I don't experience the pain, then increase the time or the pd solution strength. 
Had surgery, getting ready to train for PD Dialysis. 
Pd home changing to cycler severe edema. 
