I have been on PD since November '22. Since that time I have been experiencing nightly issues with the cycler to which my husband and I have had one week in nine months of being able to sleep the night through. (No clue why it worked that one week.) We have been doing as suggested by our care team to try different things; i.e. manual exchanges, different solutions (yellow and green) even having the programming adjusted twice on the cycler with nothing being resolved. When the Low Drain Volume alarm sounds and we both wake up, I am unable to get back to sleep and therefore with my tossing and turning my husband doesn't sleep either. At our visit today I vehemently explained my frustrations and I will now be getting an x-ray to determine if the port is properly positioned. A determination of our next steps is dependent on those results.
An additional frustration is probably more of a direct result from the lack of sleep, but I am not 'feeling' better. My labs today, as usual, were very good: all numbers well within range and much better than prior to beginning dialysis. My energy levels were low going into PD due to severe depression and a host of other ailments all contributing to my CKD. It was my understanding once I was on dialysis and being properly medicated for the depression and other issues, I would be feeling better. As I mentioned earlier, I have been on PD for nine months and am getting anxious for better days.
An issue I do not have is with my care team. I have been reading other posts and I am amazed at the varying levels of care team involvement, interaction, understanding and assistance. My care team consists of three nurses and three nephrologists. We go to the facility twice monthly. One time for labs to be drawn and additional education. The second time for a 'clinic' where I meet with the neph (on a rotating schedule), the dietician and my case worker. I consider myself very fortunate and hope you all have what you need from your care teams.
Wishing you all improved health and happy lives.
Sharon
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Sharon421
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I think getting adjusted to PD and finding the right modality can be a long process. I too was fighting nightly with the cycler for a whole year. Combined with sever RLS was having very little sleep. I finally switched to CAPD and dumped the cycler, I do Icodexterin at night for the long dwell and multiple manual exchanges during the day. This works really good for me and I'm now getting the sleep I need. I don't mind the exchanges - I have it set up next to my compute and I work while doing exchanges.
My moral - keep trying different things until it "clicks".
Thank you for your input. I am not familiar with Icodexterin but will look into it and discuss with care team. I don't mind manual exchanges however I get severe back pain carrying 'the load' around. I will try to find a way to remain seated for the majority of the dwell. Thanks again!
How long is your dwell time? If the load causes back pain, they can reduce the amount and increase the dwell time. There are lots of factors they can adjust. Keep trying and ask questions. Icodextrin is a solution that doesn't use dextrose, it is usually prescribed as a single exchange for 10-12 hours,.
Hey, just letting you know, your are NOT alone here. I've been on the cycler for 6 months and still get the cycler alarms at least 4 nights out of the week. Sometimes more. I take a pill before I go to bed at night that helps me sleep and get back to sleep after getting up for the alarm. I go to bed at 9pm (already connected) and get up at 8am just to get enough sleep off and on during the night so I can function at work during the day. Makes for a long dialysis night, but that's just what I have to do. Now I will say that I've gotten somewhat adjusted to this schedule now and it goes ok most nights. But it was definitely a major lifestyle adjustment having to allocate so many hours to this. I now go into work at 9am and work till 6pm which works for me currently.
Now about that back pain. I basically flunked manual training because by the end of the training week, my back pain was so bad it was like torture and I took myself off manual PD. The nurse didn't think the pain was related to PD, but I explained to her, it started with manuals and it stopped when i stopped doing manuals that weekend, so yeah, it's definitely related. Fortunately after seeing my urologist, my regular MD and a back surgeon to find out none of them had a clue, I decided to try PD on the cycler lying down so the weight of the fluid was distributed over a larger area than just sitting on my back nerve, and that worked. I get a slight twinge sometimes of the pain, but nothing like I experienced during manuals. And the pain I experienced was mostly when I went from a sitting position to a standing position or if I reached around to do something in a twisting motion while seated. It was very weird. The fluid was sitting on some nerve that got major pissed off.
So I'm here for ya, with similar experience if you want to chat more.
Thank you! I will keep you in mind. I don't usually chat. I gather info from the other posts, but decided I'd throw my issues out there and learn from other's experiences. Thanks again.
So sorry to hear of your frustrations....I am sure your Clinic has suggested using Heparin to keep your access clear...so it may very well be a poor Cathater placement....I have been on Cycler PD for 2 1/2 years with very few events...but I have had to have my Cycler replaced about 3 times and each Cycler is SO different...These things get overhauled and sent back out and I sometimes think they don't have all their "twerks" fixed....have you tried asking for a different Cycler ?
Haven't asked for a new cycler, yet! They have not mentioned the Heparin so I will keep that in mind after the x-ray results are discussed. Thank you for our input!!
I am kinda shocked your Clinic isn't having you use Heparin...How do they have you deal with the Fibrin that can build up in your Catheter and Transit set ?...
I was under the impression Fibrin would show up in my drain bag (just gave sample three weeks ago) afterwhich, if it was indicated, Heparin would be used. They didn't mention it could be building up inside without some of it exiting during drain. Thank you for your input. I have added the use of Heparin to my discussion list for my next conversation with my care team.
After not having a full night of sleep for three weeks I got frustrated enough that they decided to x-ray to see if there is an obstruction. Sure enough there is. Apparently the catheter is against my bowel. I am scheduled for an IR next week. Hopefully it will work. Keeping my fingers crossed!
I do have to put heparin in my bag every night I only get the low drain pain now on the drain and sometimes I get really bad drain pain with it so I think I’m about empty and if it so bad I will bypass it on the cycler . I was getting a lot of fibrin so that why my doctor has me do it every night. That may help it can’t hurt if you. Haven’t tried it yet.
Thanks Beachgirl, however I do not have any pain during my drain or Fibrin in my drain. I just gave a sample three weeks ago and no fibrin was present.
hang in there. I assume you are retired. I’d get an afternoon nap? I pray daily for those of us dealing with these issues. It’s not just an illness we can take meds for. Until the recipe is correct it’s a guessing game. 🙏🏼❤️
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