New to PD

[Wat76]

Hello All,  I am getting ready to start PD and I have read through most of the posts on the subject.  I have a question about the different ways to do PD.  I keep reading about Manual and cycler and some do both.  What is your experience with all three mentioned? Is one way better than the other.  Can you choose to do manuals and not use cycle at all or you don't have that choice.  I understand a lot about PD from reading, but don't know if you have a choice of which method you choose.  Your input will be appreciated very much.  Also, which do you prefer if you have done the 3 methods.

[jeannea]

I did the cycler. I preferred not to have my day scheduled. The cycler I could do while I slept and I love to sleep. Whether you need a manual during the day in addition to the cycler depends on your body. I did not. Your nurse will give you a choice of cycler or manuals. Even with the cycler you will get some manuals in case the power goes out. To use the cycler, you need a space next to your bed to put the cycler, the second bag, and the drain bag. I bought a cart with 3 shelves. My nurse had a video I could watch showing the cycler. Ask about it. Good luck!

[Grumpy-1]

WAT76

OOOPPPPSSSS  forgot and important item - downside - storage space.  You will need a place to store at least 40 - 50 cases of supplies.  For me we had a spare bedroom that works great - you have not have that.  Grumpy

[wbdoug]

The great thing about doing pd is you switch from doing the cycler to manuals and back again. I use the cycler for the majority of the time because for me it is so much easier to let the machine do the exchanges at night while I am sleeping leaving me free during the day and not having to deal with it. This is the option for most people who do pd and still work.
I also do manuals a lot of the time when I am traveling  and I do not want to haul the machine around or like when I go camping and there is no power.  I have done pd while camping in the middle of the desert with no facilities for miles.
Basically you can do either mode to fit your lifestyle and what works best at the time. One mode is not better than the other, it's more of a personal choise.
I just got back from a 10 day motorcycle trip and I did manuals some nights and the cycler some nights when I stayed at campgrounds that had hookups.

Bill

[Wat76]

Thanks, my garage is empty, do you think it will be a problem storing the supplies there, don't have a spare bedroom.  I was going to have my hubby build some shelves in the garage and store.  Will this be a problem and thanks again for the info. I am scared to death of this PD, but need two years to work before I can retire and don't want to do incenter.  I live in a rural area and there is no clinic close by. The main thing I think about PD is making sure your surroundings are clean.  I have watched the type, but still had some questions.  I guess I will try both and see which suits me the best.

Debra

[Grumpy-1]

WAT76

Something is wrong - I wrote and sent a long reply outlining my experiences with PD but for some reason I see it hasn't been posted.  If I can find it I'll post - or may have to rewrite it  Grumpy

[Wat76]

Grumpy, I didnt get it.

[Sydnee]

Debra,
Ed's PD nurse will not let us put his supplies in the garage. Ours is unheated which could damage the fluid.
Ed seems to be doing better on PD than he was on in-center hemo. When he was going to the center travel added an hour to the day. But there were 3 people that carpooled to D from Wheatland which is almost 2 hours from Cheyenne. Yes living rural is a little harder for those doing in-center.
A selling point up for home D.
We could fit his supplies in our bedroom. Our PD nurse came out to see if we had enough room before Ed started.

I think the cleaning of your access,hands and masking are the most important parts of PD.   

[Grumpy-1]

Wat76   Will try again.

 I've been on PD for almost 3 years. LOVE IT.  It gives more freedom to be me (work, play enjoy life) than hemo did.  My diet is a bit less restrictive and I can still work and get some sleep.  More on that later. 

I do both manuals and cycler - I think that rather you are on manual and/or cycler is directed from you Dr. as to how much fluid needs to be taken off.  There might be others here that can add to that.   For me, I 'm on PD 24 hours a day seven days a week.  There isn't a time where I don't have some dialysis solution in my gut. (not counting draining)

I'm a biker (ride a Harley) and PD allows me to continue to ride on day or weekend trips.  I just put a couple manual bags and supplies on the bike and go.  I purchased a small trailer that I can pull with the bike and rigged it to put the cycler in if I take a 3 or 4 day trip.  I work 5 days a week (long hours)  and doing manual exchanges at work also works for me.  I've driven long trips and will do an exchange in the car while driving. NO problems.   I have travel (week +) trips to Nashville and Orlando and have had supplies sent to the hotel ahead of time so they were there when I arrived.  Again no problems.   As I said in the other post, the biggest downside to PD is having a place to store the supplies.

The BIGGEST part about PD is to keep EVERYTHING CLEAN.  your hands, supplies, the exchange location, etc.  The biggest problem with PD come in the form of infection - peritonitis due to the potential to introduce bacteria to the abdomen.   I sure I'll have the ladies make comments on this, but it compairs to giving birth.  PAIN PAIN PAIN.  I've had 2 bouts with it each time spent a couple days in the hospital getting large dose of antibiotics.  Now I said keep things clean, but I'm better at giving that advice than keeping it.  As I said, I ride and trying to sterilize a parking lot or picnic area is not easy, but I do the best I can. 

Jeanna said she didn't like the to be scheduled, but for me it works.  Here is my routine. it is for a 24hour period.

Get home from work at about 5:00pm.  Hook up to the cycler - do the first of 4 exchanges.  Exchange takes about a hour including set up time.  Unhook and go down for supper with the family.  Get back on the cycler at about 7:30 and do the second exchange.  This one take about 45 minutes and is the first of the auto exchanges programmed into the cycler.  Then there is a 2 + hour dwell.  I can unhook if needed.  Then the next exchange and dwell and finally the final exchange.  This ends the session at about 2:00am.  I get up to get ready for work at about 3:30am.  After an hour+ commute I'[m at work just before 6:00am.  Will do a manual exchange at 6:30am and another at 11:00am.  I leave for home at 3:00pm and get home in time to start the whole routine over.  Now this is my work day routine. On Friday and Saturdays, I can delay the second exchange for a few more hours and go out with Friends and family as I don't have to get up so early then next morning. 

I only have to go to the dialysis clinic twice a month - once to give blood for labs and once to see the Dr to review the labs.  I'm order my own supplies once a month, I control the amount of fluid taken off (by changing the strength of the dialysis solution) I can control the session times (to some extent) I'm not required to go to the clinic and have someone else take care of the exchange for me. 

I think I covered it all, but I'm sure you are going to have other questions, so free to ask.  Also, come back often and add your comments, concerns and experiences so others can learn. 

Grumpy

[Whamo]

Grumpy,
I get my PD surgery next week.  I'm excited.  I will certainly pay close attention to keeping clean after reading your post.  I hate pain.  I've already had my share, so I'll be diligent.

[Joe]

I have also done both CAPD and CCPD, and am now doing kind of a hybrid of the two. I do a manual in the afternoon with 2L that dwells for 3 hours. I then connect to my cycler for the night and that goes through 5 drain and fill cycles leaving me with 1.5L when I finish in the morning. 3 hours later, I drain that off and am empty until 5 when I fill again. I really do like the freedom I have with not having anything 'on board' for the main part of the day. It lets me go work out, run errands or whatever without having to worry about being careful because I'm full. I will agree with Grumpy1 about cleanliness. It is paramount!

Good luck and let us know if you have any questions.

[tito]

I love PD and have been on it for 3 1/2 years. I can compare it favorably to hemo (just completed 9 weeks of in center overnight hemo, see my posts regarding calciphylaxsis).

For me, it has given me the freedom to travel, and that was one reason I chose PD. On the other hand, being a slow transporter, PD has not been as efficient as hemo. I do three cycles per night, plus a manual in the afternoon. I have trouble with my phosphorous level, and this led to a bout of calciphylaxsis.

I travel in that I go to my condo in Mexico or away for weekends. I can bring PD supplies with me or have them delivered in Mexico. I cannot go on the type of trips we really like - getting in a car in Jerusalem, for example, and traveling all over Israel. I could have supplies delivered to Jerusalem, but hauling them around the country in extreme heat would be out. At least I got to do this once before kidney failure. Same thing for a trip we would like to take to South Africa. For these, I'll have to wait for a transplant.

[Wat76]

Thanks to everyone for the information.  Looking forward to trying PD, if I fail, at least I tried and don't have to wonder.
Debra.

[Willis]

Thanks to everyone for the information.  Looking forward to trying PD, if I fail, at least I tried and don't have to wonder.
Debra.

I've read that PD doesn't work for some people but considering the alternative (death) it hasn't been that bad really. I do the cycler and it becomes mere routine to get it set up before bed. I can do manual PD and have on occasion when travelling. The manual PD is a good backup plan in case the power is ever out for a long time (haven't had to deal with that yet). The last time I went away for a weekend I decided to take my cycler and it was worth the trouble. I feel much less restricted with the cycler and don't have to watch the clock all day. I still hate dialysis but so far I think choosing PD on a cycler was the best choice for me.

 

[Grumpy-1]

Update from last post.  I get to travel a bit both for work and pleasure.  As I said, I'm a biker and enjoy getting on the bike for a weekend get away.  For those trips, I can take just manual bags or the cycler as well.  While taking the cycler on the bike (in a trailer) isn't the easyest, it does make it so I can sleep the night verse having to wake up every couple hours to do an exchange.  For longer trips, I will have supplies sent to the hotel and take the cycler and a few supplies with me in the car.  So far, I decided not to try to fly anywhere.  Not in the mood to try to get through all the security stuff with manual PD bags, needles and such.  Grumpy

[Joe]

Grumpy, I did a trip to DisneyWorld in August with my cycler. Other than the hassle of dragging my cycler and stuff through the airport, it all went well. Didn't have any issue with TSA over carrying 2L bags of dialysis fluid or syringes with me. I just had them hand check the bags and off we went.

[Grumpy-1]

thanks Joe - Some day I'll give it a try.  What did you tell them about the fliud and needles? 

[PatDowns]

Update from last post.  I get to travel a bit both for work and pleasure.  As I said, I'm a biker and enjoy getting on the bike for a weekend get away.  For those trips, I can take just manual bags or the cycler as well.  While taking the cycler on the bike (in a trailer) isn't the easyest, it does make it so I can sleep the night verse having to wake up every couple hours to do an exchange.  For longer trips, I will have supplies sent to the hotel and take the cycler and a few supplies with me in the car.  So far, I decided not to try to fly anywhere.  Not in the mood to try to get through all the security stuff with manual PD bags, needles and such.  Grumpy

See if your nephrologist will prescribe EXTRANEAL PD Solution for once a day/night longer dwell time.

From Baxter (http://www.baxter.com/patients_and_caregivers/products/extraneal.html)

Extraneal (icodextrin) Peritoneal Dialysis (PD) solution is indicated for a single daily exchange for the long (8 to 16 hour) dwell during Continuous Ambulatory Peritoneal Dialysis (CAPD) or Automated Peritoneal Dialysis (APD) for the management of End-Stage Renal Disease (ESRD). Extraneal PD solution is also indicated to improve (compared to 4.25% dextrose) long-dwell ultrafiltration and clearance of creatinine and urea nitrogen in patients with high-average or greater transport characteristics, as defined using the Peritoneal Equilibration Test (PET).

[Grumpy-1]

Thanks PatDowns.   Will look into it today - will at the clinic later today and will be asking about it.  Grumpy

[Joe]

Grumpy, I had a letter from my center that detailed everything I was carrying. Not a problem.

[phyl1215]

I was on PD (cycler), 4 exchanges at night for 3 1/2 yrs. before my transplant 3 mths. ago.  I had hardly any problems with it and we spent a mth in Florida, Cape Cod, with family and friends homes, for the month trip we had the solution delivered to our condo there.  I had to do manual exchanges for one mth. so I would know how to do manuals in case elect. went out.  I had one noisy machine and one that stopped working and Baxter overnighted new one to me and I had it before bedtime, no problem.  I never had an infection because each and every night I did exactly what I was taught to do, it was just part of my routine.  We have a small dog and I just kept her out of the room while I hooked up and unhooked but she didn't sleep with us, she was in her crate in our room though.  You can get creative with the boxes of solution but you cannot keep them in a garage, we used our walkin closet, some put them under steps or in a spare room.  I also got a 3 canvas drawer cart to hold supplies at Bed, Bath and Beyond, I believe Walmart has some carts on line.  After 3 mths being off PD I still expect to see my machine when I walk in the bedroom!!!  You'll do great.  Best wishes.

[lmunchkin]

Thanks to everyone for the information.  Looking forward to trying PD, if I fail, at least I tried and don't have to wonder.
Debra.

You have a good outlook on things. It never hurts to try!  I believe you will learn it and do very well with it. At least you are at home in familiar surroundings.  You should look at TBarretts day to day posts on her training.  There are others here that give a day by day training too.  All are very informative, and will help you along the way!

Just be deligent & listen to the nurses when they train.  Especially the sterile part. There is a reason for sterile surroundings. You will Do Fine Debra!

Good luck & God Bless,
lmunchkin

[Wat76]

 Thanks everyone. Will update with a progress once I get started.  Again a big thank you.

[blondie1746]

wat76, hope your PD experience is gong well.  When I first started last November, I was told I had to learn how to do the manual exchanges for a period of time and then I could switch to the night-time cycler.  Because I am a rapid-transport (I have large holes in my membrane) I had to use the highest strength solutions and still was absorbing fluids, so I had swelling issues.  After 1 month of doing manual PD, I was put on the cycler, hoping it would help with shorter dwell times.  Eventually the swelling issues were resolved and now I use green bags every night.  I travel with my cycler, because I like the freedom of not having to do any exchanges during the day.  During the 1 month of manual PD, I felt tied to my house to do an exchange every 4 hours.  It felt like as soon as I was done, got ready to leave for errands, I was watching the clock and had to rush back home for another exchange.  You do get used to the "grey" noise from cycler.  I can remember many nights of bad drain pain while on the cycler as well as having a hard time getting a good drain while doing it manually.  It happened gradually, so I didn't really notice it, but now PD goes so smoothly for me.  Do I wish I didn't have to do dialysis at all?  Of course!  But I am now a happy PD patient!  Good luck with your journey!

[Whamo]

I'm liking PD so far, but I've only been on it for a week.  I had a couple of problems, but they were just bumps in the road.  It's gotten cold here in So Cal, but it's supposed to warm up tomorrow.