? about PD

I am in the process of choosing my modality and am leaning towards CAPD or CCPD. Here are a couple of concerns of mine:

  1. What does it feel like walking around with 2.5 liters of fluid in your tummy. I get nauseus when I’ve had to much liquid to drink, will it feel the same?

  2. Will I be able to lift my new granddaughter? She is 17lbs and growing!

  3. One of the reasons I’m less interested in CCPD is that I like to sleep on my sides and tummy, spooning my hubby and vice versus. It seems like CCPD would limit these sleeping styles.

Would appreciate your thoughts and thank you for a very interesting forum.

Jeanne

I can answer some of your questions but not all. I have been on PD since Aug. I cycle at night for 7hrs, which for me has worked out well. I still produce a lot of urine so my fluids are not restricted. By cycling at night I can forget about dialysis for the day.

I can’t say what it feels like to have 2.5L of fluid on board as I am ‘dry’ during the day. My cycles at night fill only to 2L, and when laying down do not give too much pressure–not too bad either if I am up moving around after connecting to the cycler.

I would think you could still lift your granddaughter once your site has healed. I have been lifting heavy objects but been sure to use good body mechanics in the process.(and make sure my bladder is empty!)

As for sleeping—I have no trouble sleeping on my side or spooning my husband while the cycler is merrily pumping away. I use a Baxter Home Choice. Once I am through with the last drain, I have rolled over on my stomach occassionally. You just have to be careful not to become too tangled in the tubing. You might even be able to sleep on your stomach during the cycles. You just need to be sure the tube is not kinked or it will set off alarms on the cycler.

Hope this is of some help to you.

Ginger, this does help a lot. I didn’t think you could cycle for as little as 7 hours. Everything I’ve read is 10 hours. Do you mind sharing at what point did you go on dialysis? I keep thinking that the sooner the better, maybe that is true.

One of the reasons I didn’t think CCPD would work for me is I only sleep for about 6 hours. I know I couldn’t stay in bed much longer and the 10 hrs I’ve read about seems unmanageable to me.

Thanks
Jeanne

I have PKD and still have some residual function so do not need fluid removal only toxin removal at this time. I began PD when my creatinine was about 7 and my Bun in the 80’s. My GFR was between 6-9% depending on the formula used to calculate it. I was starting to get indigestion every day and when I bent over thought I was going to throw up. Otherwise I felt well, just tired and not much energy. After starting PD my head cleared and I found some energy returning. Although I probably could have pushed dialysis off for a bit longer, the increase in energy and a clearer head are very much worth it.

I still work part-time and when they started me on PD, the nurse set me up for 9hrs. I found this to be too long as I could not stay up late and then get up early—there were not enough hrs in the day!!! I talked with my neph about the timing as he had told me that since I still felt good, I could start slowly. I suggested 6hrs and he laughed but then compromised on 7hrs. The 7hrs is very workable for me as I can hook up as late as 1AM and still be off and running about by 9AM. During the 7hrs, I have 3 exchanges of 2L each. When I was doing the 9hrs I would have to hook up by 10Pm. There is a patient extension line that you can get that gives you a total of about 22ft that you can move away from the cycler after hooking up. I used that when I was doing 9hrs as that way I could reach my computer, and chair in living room to read or just visit with my husband. I was not banished to the bedroom as soon as I needed to start dialysis. In other words, you do not have to stay in bed to be on the cycler. You just need to arrange your activities so that what you want to do is within 22ft of the cycler once you have connected yourself.

I know that I will have to be on the cycler for longer periods of time as time goes on unless I get a transplant, but so far between my residual function and the little dialysis that I am doing, my clearances have been very good.

Good Luck, Ginger

Ginger, thank you very much for your reply. The information helped a lot. My 24 hr clearance is 23, GFR is 15, and other than fatigue, I’m feeling okay. I’m starting to feel like I have GERD, so wonder if that is indigestion. I cannot eat much before I feel like it is in my throat. Also, my abdomin feels bloated and I can’t button/zip my pants that should fit me at my current weight. I get the hiccups a lot, too. Don’t know if any of this is related to KD, what do you think? I keep saying I feel fine and I don’t have symptoms but then I make a list like this and wonder.

Jeanne

Your symptoms are consistant with KD. Have you tried freq small meals? About 2yrs before I started dialysis, I was on a low protein, low salt and low phos diet to try and protect my kidneys for as long as possible. Sometimes changing diets can help the kidneys function for a longer time. Talk with a renal dietician to see what they would recommend for you. Most of the time the recommencations are for low protein, low phos, no salt and watch potassium. The dietician uses your lab values to recommend what is best for you. After beginning PD, your diet will change again to high protein, low phos, because you will lose protein in the dialysis drainage.

A GFR of 15 is getting borderline. It is at 15 that diabetics should begin dialysis. People with other kidney diseases may be able to wait until a GFR of 10 as long as they feel good. The general recommendation is to begin dialysis when your GFR is down to 10. It is also possible to begin PD as soon as 1 week after having the catheter placed so there is usually no rush to have it placed. On the other hand, if you were going to do Hemo, then the fistula should be placed several months before you plan to start.

There is a ‘brumley’ message board for PD that you might be interested in reading.

Ginger

Hello Jeanne, i’m new to the board, but have been on dialysis CCPD/CAPD for 3 years now. I’m 24 years old and been having kidney problems since i was in 2nd grade.

I hope i’m able to answer a few of your questions, because i remember when i started very well. First i’ll give you a little bit of my stats to understand what i’m doing each day.

During the night, i will do 5 full exchanges on the Cycler machine, first i will drain what i have in first (about 15 mins), then it will fill me with new fluid (about another 15 mins), then it will dwell (rest) for an hour and a 1/2 and then repeat the process. Then, at around 6pm, i will do one CAPD, (I call it a Mid-Day Manual) and let that dwell utill my night time exchange. Now i am able to do the Mid-Day on the Machine, but i don’t really want to be tied to the machine during the day, even though its only about a 1/2 hour, i like to be able to get on the computer and such. So the CAPD is a little more Mobile, more on that later.

I’m am currently on the Fresenius Medical Care Newton Freedom Cycler with the Stay Safe connectors.

  1. What does it feel like walking around with 2.5 liters of fluid in your tummy. I get nauseus when I’ve had to much liquid to drink, will it feel the same?

The first 2 or 3 exchanges was very nauseating to me, i remember pulling off alot of extra fluid (effluent). But after that, it took a few days, but it mainly felt like extra weight, it didn’t feel like “water weight”. It was a little discomforting, but your body should adjust to it right away. (I’m currently at 3 liters of fluid.

  1. Will I be able to lift my new granddaughter? She is 17lbs and growing!
    Yes, I have no problem lifing my cousins (ranging from 30-50 lbs), plus not to mention, the solution i have to carry upstairs to my bedroom every coulple of days. (I usually try to bring 3-5 days in at a time, which each day weights bout 20-25 pounds.)

  2. One of the reasons I’m less interested in CCPD is that I like to sleep on my sides and tummy, spooning my hubby and vice versus. It seems like CCPD would limit these sleeping styles.

These was one of my big concerns as well. Depending on which side you get your catherter placed, you may still be able to sleep the way your used to. Granted, there still are times when the machine will alarm and tell me theres a kink in the tubing or i’m laying on it. I have a catherter belt and i can still lay on my side and watch tv at the same time, the only thing i’m not able to do is lay on the stomache and sleep.

To sum it up, here are some pros and cons, in my point of view:

CAPD (Manuals) - Pros:

  • Sound sleep
  • freedom to move about
    CONS:
  • Must be do an exchange every so many hours
  • More chances of infection (each time you hook up to do an exchange, in another chance for infection)

CCPD (Cycler)
PROS

  • Will do all or most of your exchanges at night, you days are pretty much what you want to do
  • Usually only one hookup, less chance of infection

CONS

  • Will wake you up from time to time
  • May have to get used to new sleeping arrangements.

This is a really tough choice to make, but if any, you can try them both and see which one really works for you. If you are interested, i could take some pictures of around my house and garage, so give you an idea of how i have things set up and how much room you may need. If you have any questions, please feel free to ask, or email. If you are interested, i have a couple of pamphlets laying around i could scan for you that will give you a little more ideas about how to hook up and stuff.

But remember one thing, PD needs to be very clean and aspetic.