[LEFT]I have been on PD for over a year now (with Baxter products) and generaly love it over HD but have one minor issue with my setup. About once every week or two I need to disconnect during a cycle and got to the bathroom for a bowel movement. When I do this there is an increased chance of infection I want to eliminate. {When I need to urinate I use a graduated cylinder I keep by the bedside)[/LEFT]
[LEFT]I see that Baxter has a simple 12 foot Patient Extension Line (part 5c4480c) that would let me reach the toilet without disconnecting and solve this. I have asked my Nurse to approve this when I order monthly supplies, but she had adamantly refused to do so. The situation has gotten so bad we are likely to change dialysis centers over this. She has given no rational for this decision and now wants to do another home inspection as a form of “punishment” for my asking (although she had come up with some false excuses including “it uses too much fluid up” and “you already have the longest length allowed”, etc…) Like many centers, they have very few PD clients so support can be spotty. [/LEFT]
[LEFT]My question is this, when is using such an extension contraindicated and how many others do use such a thing (how common is it)? I was unable to get any sense of numbers of percentages from the Baxter sales rep, but I got the distinct impression that a considerable number of their clients used this routinely. I have placed a call with the local Baxter education person to see if there is something I am missing, (and perhaps this can get my nurse educated with more facts) but post here to see if any one has any possible reason why not to use such an extension. [/LEFT]
DC, I think a longer extension set is a perfectly legitimate request, and am troubled (as you are) by your nurse’s refusal to order you such a simple thing or give you a reason for not doing so. (I’m aware of folks using 20-foot extension sets for that purpose). I actually don’t think you should have to urinate in a jar by your bedside, either!
Have you talked with your nephrologist about this? Otherwise, you may be on track with your thought about switching clinics–that’s a better idea than risking peritonitis from additional connects and disconnects that are otherwise unnecessary. 
My nephrologist and I will speak in 2 weeks, but this little matter has been festering for over a month now. I am prepared to “blow up” at the doctor and issue an ultimatum, but I really do like both him and every other person we have worked with at this clinic. In general they have been accommodating and forthcoming and seem to support the patient being involved in many ways [Aside: I read another post regarding someone who has to wait weeks to get requested blood test results from their clinic, I can not image this sort of treatment (mine are presented to me the moment I walk in the door)] If it comes to a change, I will contact the local Baxter rep and my endo to try and find out who has a more active PD practice in my area.
But I am hoping things wont go that far. I am playing phone tag today with the local Baxter educator and I am hopeful that this person might be able to mediate a bit and perhaps get the nurse on the same page. I don’t think I will ever forgive or forget that she has lied to me, but if I get over this I may tolerate her for the sake of the others she works with.
I appreciate knowing that a 20 foot extension even exists. Don’t think I will need it, but it good to know. The “jar” allows measuring the fluids, which I sometime chart to compare with my daily drain volumes.
Hi DC,
Beth hasn’t had a chance to post, but I did talk to her about this, and she suspects (as I do) that the issue is cost. We don’t know how much an extension line costs–and I suspect it’s not much–but the PD nurse may not be authorized to spend any extra money…
Baxter lists it as $225.68 for a pack of 30 full retails at their e-site, link below. I know these things are discounted in various ways, so unclear on the real cost. My knee jerk thought is that $7.52 a day is probably a lot cheaper then the medication for an infection. I really have no idea the cost involved in treatment and probably should interest myself more in this (we get billed anywhere from $2k to 200 for a month for services, but this is after insurance is involved). Over the time we have been with this client my wife and I have detected a general sense that PD is less profitable and that the owner has suggested we go back on HD. When challenged for a medical reason why, the topic seems to get dropped.
(http://www.ecomm.baxter.com/ecatalog/browseCatalog.do?lid=10001&hid=10001&cid=10016&key=f8bea7f6dcb232b1aa192f9247fc5c51&pid=465912)
Interesting that you’re getting the sense that PD is less profitable than in-center HD–generally the opposite is true, since most of the cost of dialysis is in staff time. Folks on PD use much less staff time, so it’s much cheaper, and clinics make a good profit on it (even with extension lines). How many patients does your PD program have? There are economies of scale–generally a program needs about 1 RN per 20 patients or so, so if the program is smaller than that, there’s no-one else to be on-call, or the PD nurse will have to split time with the in-center unit, which rarely works out well.
Here’s an article we wrote about how to choose a home program that might shed some light…http://www.homedialysis.org/resources/tom/200904/.
I am not sure the patent count for PD, I was told “4” a few months ago but will check again, its certainly very small. The single nurse who handles all PD is also a full time HD nurse and take time from her in-center duties to deal with us. She is one of 6 they have working between two physical centers. Good article link, I will be asking some of these questions soon.
Just got off the phone with the Baxter education rep in my area who confirms everything everyone else states, i.e. it is common to use, that what its for, there are not really any counter indicative issues. She offered to educate my PD nurse but I asked her to hold off until I meet with the Doctor and thrash this all out in 2 weeks. Frankly I will be going in there with a large chip on my shoulder.
It’s important to be factual–but try to stay calm when you talk to him. You have a legitimate case and want his (her?) support. It’s likely not the nephrologist’s fault that your PD nurse has been obstructive; it probably has more to do with the small size of the PD program and a nurse who isn’t fully up to speed…
I concur, and the doc and the others in this office are the “keepers” in all this. Firm, reasonable, but insistent on a solution all the same may be the best course here.
I just got a follow-up call from the Baxter person telling the story is a bit more complicated that first impression. Apparently the “3 prong” cassette is already considered “long” and it is the 4-prong one that is typically extended with the 12ft extension (I use the three) Its not clear when the 3-prong can be extended or when people might use the 20ft extension that a prior poster mentioned. The Baxter rep claims there were issues of “reflow” when used, which I frankly don’t understand. Baxter local has promised to get with Baxter central and get back to me.
“Long” isn’t long enough if it doesn’t reach to your bathroom. 
Please do let us know what you hear from Baxter. I hope they can figure out a way to allow you to have a longer extension line. One option that hasn’t been mentioned in this thread is if it’s impossible to get a longer extension line, would you consider using a bedside commode? These are typically covered by Medicare and other insurance if medically justified. I think your doctor could provide medical justification. It would certainly be better than what you have now.
The good news is that after a visit the doc this morning, long delayed by mutual scheduling conflicts, I will be getting the extension tubing prescribed. This took yet another call to Baxter (I belive the 5th between us) to settle if it could be done, then no problems.
There seems to a degree of misinformation about the use of the 12ft patient extension with the 3-bag cassette and its existing 22 ft line. Baxter recommends not more that 34 feet in total, i.e. one extension to be used max. Many folks seem to be a bit confused on this point.
Yay! Glad you got that sorted out, DC. It seemed like a reasonable request all along to us.
An update. Well I have been using the extension for about 2 weeks now, and life is clearly better. While I don’t need it every night, having it means no more mid-cycle disconnects, so chance of infection is reduced as well.
That’s great to hear! I’m sorry you had to go through so much aggravation to get there. How’s everything else going for you?
