Getting ready for dialysis, questions about PD

[amoeba]

I'm down to GFR of 7. Although I'm feeling fine but I don't know how much longer that will last and nervous about starting dialysis...  Aside from IGA nephropathy I don't have any other medical issues. 40 years old.

Looking online, it seems like PD may be a good option for me. My wife can be a caregiver to support me if needed. For you guys, can I ask a few questions about your experiences? My appointment isn't until next week.

1) Does the PD catheter take a long to be ready? Can I wait until I start feeling poorly to do the surgery?
2) Can you shower with PD?
3) Do you feel well enough to work 40 hour weeks in a office desk job environment with no physical activity?
4) Is the machine loud at night?
5) I read for night time PD with machine, you have to be in bed for 10-12 hours. Can you do other activity in bed during that time like eat/read?
6) Is there a machine to help you do PD exchanges during the day?
7) For daytime PD exchange, do you just sit in a bathroom for half an hour to do the exchanges?

Thanks for your help!

[Emerson Burick]

1) Does the PD catheter take a long to be ready? Can I wait until I start feeling poorly to do the surgery?

Looking back at my calendar, three weeks passed between the time they installed the PD cath(s) and when I started moving any fluid at all, and then it took time to work its way up to my full amount. Remember, you'll start out doing things manually and they have to test whether your P does D fast enough to use a cycler. So the basic answer is no. By the time you feel poorly (by which I mean edema and vomiting) it will be too late to wait three weeks and they'll stick a hemo cath in your chest.

2) Can you shower with PD?

Once it's healed, yes.

3) Do you feel well enough to work 40 hour weeks in a office desk job environment with no physical activity?

Yes. Oh, and a warning about the default machine settings: By default the cycler is designed to take as long as it takes to do the cycling and dwells, so it will make you late for work. Change the settings so that it will stop after the allotted time and just make a note of how much time you missed. If it's just a couple of minutes it's no big deal, but if you're losing a significant amount of dwell time it matters. Just calculate the percentages and tell your nurses.

4) Is the machine loud at night?

There are different parts to the cycler's annoyance. The first is that it vibrates. You can make this less obnoxious by setting it on some sort of vibration-dampening material. I used a padded laptop sleeve that I wasn't using and that cut the hum way down. The second is that the display is very bright, but you can adjust the brightness of the display. Check the manual. Finally, you can turn down the alarm, which won't help much, but if you also tape a big hunk of gauze over the speaker grill it will make it a more reasonable volume.

5) I read for night time PD with machine, you have to be in bed for 10-12 hours. Can you do other activity in bed during that time like eat/read?

That's not technically correct. You have to be attached to the machine while it is moving fluid in or out, and that's it. My strategy was to set up the machine while dinner was cooking so it could do the self check and warm up the bags while I was doing something else. Then I would hook up for the first exchange then unhook and have about 2.5 hours of freedom. Then I'd hook up again before bed. You'll hear that unhooking is for emergencies, but so long as you don't contaminate anything you'll be fine. In bed you can do anything--eat, drink, read, have sex, watch tv, work on the computer, whatever.

6) Is there a machine to help you do PD exchanges during the day?

Nope. That one goes manually.

7) For daytime PD exchange, do you just sit in a bathroom for half an hour to do the exchanges?

Not a chance. I sat in my office and did the exchange at my desk while working away on the computer. If someone came by maybe I'd say something lame like "Excuse me while I tap a kidney." If I was being cruel I wouldn't explain anything. I kept my door closed while doing anything sensitive like connecting, disconnecting, or prepping bags for injections. (I kept a shoebox with all sorts of useful things on my shelf.)

[Joe]

I will agree with Emerson and all  he said, with the exception of disconnecting after the first fill in the evening. Not saying you can't do it, I just didn't. My patient line was long enough for me to connect and then go sit in my easy chair in the loft until I was ready for bed. All the while the machine was draining/filling/dwelling/draining as I watched TV or read. It will take a couple of weeks for your PD cath to heal, so the sooner you get that done, the better. I had 6 weeks between my surgery and when I had to start PD. We put it in ahead of time, and knew it would be a while before I needed to use it. Best of luck, and ask any questions you may think of, the more information you have, the more comfortable you will be with this whole process. Best of luck!

[amoeba]

Thanks. Because I don't know when my dialysis will start (month to year), wouldn't putting in the line early mean you have to clean it every night and have longer exposure risk of infection? I guess it's better than a neck tap.

I'm curious about the machine. Can it be wheeled around the house like an IV machine to give you more freedom? Or is there a requirement for it to be absolutely still and level?

When does the machine alarm?

Is it hard to sleep on the side? I'm a side sleeper

[Joe]

No Emerson, just because they put it in early doesn't mean you have to clean it daily. In fact, the original orders for my surgeon were to place it and then bury the end in my stomach. As the doctors evaluated my condition, they changed their minds and told her to leave it out. That was because I was degenerating faster than they originally thought. As for moving the machine around, I guess you could if you had a long enough cord (and it would have to be a heavy cord, 12 ga at least), but the patient line is 20' long. That gave me lots to be able to move around. Measure and see where the best location for the machine would be, you might be surprised. The machine alarms when it detects a fault, there are a myriad of reasons for an alarm, but my most common ones were: low drain and reduced flow alarms. Both were typically caused by me rolling over on the line and inhibiting the flow, either in or out. I usually repositioned myself and the problem cleared.

And I also slept on my side, it wasn't a problem.

[Simon Dog]

Standard lines at 10 ft, not 20ft (at least with Fresenius).   Be sure to ask the RN handling your case about longer 20ft lines.

Back and side sleeping is easy.  Stomach sleepers might have a problem.

[Joe]

Simon, with Baxter they are 20' lines, both for the patient and drain lines.