My fiancee (age 50, 52 kg, PCKD) is experiencing SEVERE cramping of her feet and calves, along with very strong to severe drain pain very frequently. She uses a Baxter cycler with 1.5% dextrose dialysate, has been on PD about 7 months. Early on she didn’t have a lot of discomfort, but that ended. At her servicing clinic, they’re doing labs tomorrow is the most aggressive response we’ve had so far, and they’ve basically seemed to ignore her complaints of these symptoms in the past without specific investigation or management for that which we know of. I assume it’s because they don’t know what to do about it and have an extensive patient load. I’ve read your post “Heading Off the Dreaded Cramp!”; it was very comprehensive and explanatory and pointed to a potential solution in 1-2 mg clonzepam.
[B]Firstly, I do not consider myself any great authority on PD, as my role here is in my greater area of expertise … haemodialysis - and home HD at that. But, I will try to offer answers as best I can. Maybe Dori could forward your questions to her PD guru, Judith Bernadini, to whom perhaps these problems may be better directed! But, here goes my shot at it, for what it’s worth …
To answer your questions, I offer the responses in ‘bold’ …[/B]
- what labs should we be looking for them to be conducting, and what values should we be watching out for in additon to Ca, K, Mg, Na? (I understand your point in another post about US vs Australian measures.)
[B]Cramp is a common symptom in dialysis patients. While cramp most commonly occurs during haemodialysis, and I have already tried my best to discuss some of the causal theory in my HDC KidneyViews blog, cramps and/or the restless legs syndrome - occurring at times unrelated to the dialysis process itself - are also common, and are mainly troublesome in the evening, when sitting after dinner, or in bed at night.
The causes of this latter form of cramp and/or restless legs are less well understood. Cramp in peritoneal dialysis patients is not as common as in HD patients - and esp. those in facility dialysis. When cramp does occur in PD situations, it most often falls into the latter group and is not likely due to the electrolyte shifts that are the prime reason for cramp in HD patients during their dialysis. As such, unless there are gross abnormalities in K+, Mg++ or Ca++ ( which should be unlikely if her PD is being well managed), then I doubt you will find the reasons there.
While Her biochemistry is clearly worth checking, and correcting if abnormal, my guess is that your fiancée will fit into this second category where the cause is obscure (a response you don’t want to hear but which is true as, broadly, we just DONT know) … and a symptomatic response to something like clonazepam is likely your best bet.
In addition, she has APCKD and is young, and thus vascular insufficiency due to major vascular occlusive disease is unlikely. So, the short answer is - yes, check the bloods, but don’t be surprised if they are OK and you end up with a treatment aimed at the symptom rather than the (unknown) cause.[/B]
- Are there additional tests (she’s not yet had the peritoneum test for its operating characteristics but it is scheduled) that we should be asking for?
I presume she has had a PET test as she has been on PD for 7 months now and should well and truly have had her membrane function checked and her transporter status characterised by now. If not, that should be done.
- I read the abstract on the benefits of varying the dwell time (short/long) and fill volume (small/large) in Perit. Dial. Int 2011 July-Aug. 31 (4) 450-8. Is this a path clinicians are adopting and should we ask them to pursue this approach?
Attention to her ‘fill volume’ is a clear option here … but see below in Q5.
- Should we be looking at using a more concentrated dialysate?
That is a question that it is quite impossible to answer on the Internet … It needs a hands-on management understanding of her numbers and volume status, information I do not have, nor can I get it adequately without knowing the patient personally.
- It seems to me like the layman’s version of what seems to be happening is that PD is sucking her electrolytes out beyond healthy/comfortable levels, and it may be totally simplistic but I wonder why we can’t reduce the number of dialysis days regularly to avoid this (she shows no water retention and has full urine function).
[B]I doubt that her PD is doing the former, and the latter is NOT a good nor correct response. If your observation here is referring to her outflow pain, then the following may be worth considering …
Pain during inflow is not uncommon, and if (a) recurrent and (b) unassociated with peritonitis - a complication which would become rapidly apparent by other criteria - is most commonly due to jetting of dialysate onto bowel or bladder surfaces, especially if the PH is too low (uncommon now with modem dialysates) or the dialysate has not been heated to an adequate temperature.
Pain on outflow - especially towards the end of outflow - may indicate ommental drag or, again, bowel or bladder irritation (or, if her pain is only on one side and especially if it tracks to her groin, consider whether PD is a good fit with her PCKs … esp. if they are large), and whether the catheter is misplaced in the vicinity of one or other of her PCKs.
One trick to correct outflow pain can be the use of Tidal PD …
Tidal PD is where a volume of fluid is purposefully left behind to form a ‘sump’ or ‘reservoir’ of fluid such that the peritoneum is not drained dry but each ongoing cycle occurs on top of the retained volume - always leaving a few hundred mls inside. You can find a description of Tidal PD at …
www.pdiconnect.com/content/20/Suppl_2/S98.full.pdf
Finally, outflow pain can sometimes only be resolved by the repositioning or replacement [/B]of the catheter - using a coiled catheter (like a Toronto Western) rather than a straight segment Tenckhoff.
- What other suggestions and thougthts can you guide us with?
[B]So … yes, have her basic biochemistry checked but don’t expect the answers there … Try medication like clonazepam … get a PET test repeated or done … don’t down-size her PD … consider switching to Tidal PD … and checking catheter site and position.
[/B]
I know this is a long post with several questions; I hope you have the opportunity to respond soon and I so very much appreciate this forum as a way to connect with expertise and experience. It is astonishing how difficult it has been to learn enough, fast enough, as we have gone through this adventure, and I’m blaming no one for that – her original nephrologist has been beyond wonderful, but it’s just a lot to learn, and do, and go through. She started with HD at clinic, but found it too depressing and confining and uncomfortable and was delighted to find and access PD. Now we’re trying to manage the situation we have and praying for a transplant. Thank you again!
I am not sure if any of this has helped. Again, your best bet is through your nephrology service - and they should know all this stuff and be able to better explain and assess than I can