Thinking about going on Perotoneal Dialysis

[Whamo]

I've been doing Hemo for about a year in a good center, but I am considering Perotoneal Dialysis.  It sounds good to me, but I'm trying to get second opinions.  What should I know before I make a decision? 

[tito]

I've been on PD for three years and it is great. You should have a place to store multiple boxes of solution, as deliveries are made once a month. You will use two or three bags each night (two to a box). PD requires some set up, which really is not hard. You have to do some of it under clean conditions, requiring you to wash up, use a mask and turn off all fans, close the windows. PD on a cycler is great, you set it up and go to sleep. The length of the tubing gives you freedom to move around in bed, unlike hemo where you are more restricted. Travel is possible - you bring the cycler and bags with you or do it manually, hanging bags and sitting for about half an hour. You can travel by air and have the supplies delivered to your destination. I have a place in Mexico and Baxter delivers the solution right to my condo in Puerto Vallarta. I am doing some hemo along with my PD for a few weeks to get rid of calciphylaxsis (see my post about this). I can compare the two - I like PD much better - can't lie still and sleep for the eight hours overnight in the center. They kick us out at 3 AM!!! So, as long as you can take some responsibility for set up, ordering supplies, etc., PD is much, much better.

[deniferfer]

Hi whamo,

I have been on PD now 15 years.. I really like it and feel it gives me a lot more freedom. But you also have to think about how you feel about being tied for 8 or more hours. For me I'm in bed during that time anyways and can watch TV, read or use my laptop. Energy wise, you don't feel as wiped out as you do after hemo. You are able to eat more of the no no foods cuz your are on every night. Like tito said you do have to do a bit of set up and you do have to learn how to keep things clean or you risk getting a peritoneal infection. I'm going to level with you they hurt ALOT and you feel really bad for a few days. But it is very easy to prevent them if you follow the the instructing on how to set up. The boxes are a bit much to deal with cuz they take up a some of space. But I was able to get my delivery split into to deliveries, to cut down the amount and I can just keep them now in my room. I have never had a problem with my delivery guys they are both very nice and are willing to stack the boxes anywhere i need them to. Heck I even need him to jump start my car once and he helped me. lol Also enjoy PD a lot more cuz there is no pain involved in doing D. Ie being stuck with needles. Hmm what else mite be good for you to know? Oh there is the choice between manual or using the cycler..  Manual bags gives you the freedom of not being hooked to the machine for hours at a time. but for me, I don't feel as good as I do when using the cycler. The only thing with the cycler is that it does have a bit of a white noise when running. I don't hardly notice it and the only time I wake up is if it alarms. then you just have to correct the problem and start it again. But over all I have enjoyed PD and recommended it if your able to do it. 

[Whamo]

Thanks for the perspective.  I think I'm going forward towards the machine version.  My veins are hard to find, and I hate when they poke and poke and poke and still can't hook me up. 

[KAF454]

Whamo, it does involve abdominal surgery to place the catheter and you will be pretty tender for awhile. You can't rush right back into physical activity and they'll probably give you a 20 pound lifting restriction for as long as you have the cath. The first couple of months while I was healing were the worst for me. Now it's just part of the nightly routine.

[MaryD]

With both my PD catheter placements I only felt a little bruised for a day or two afterwards - no other discomfort.  I hope you get through as painlessly as I did.

[Lillupie]

Hi whamo,

I have been on PD now 15 years.. I really like it and feel it gives me a lot more freedom. But you also have to think about how you feel about being tied for 8 or more hours. For me I'm in bed during that time anyways and can watch TV, read or use my laptop. Energy wise, you don't feel as wiped out as you do after hemo. You are able to eat more of the no no foods cuz your are on every night. Like tito said you do have to do a bit of set up and you do have to learn how to keep things clean or you risk getting a peritoneal infection. I'm going to level with you they hurt ALOT and you feel really bad for a few days. But it is very easy to prevent them if you follow the the instructing on how to set up. The boxes are a bit much to deal with cuz they take up a some of space. But I was able to get my delivery split into to deliveries, to cut down the amount and I can just keep them now in my room. I have never had a problem with my delivery guys they are both very nice and are willing to stack the boxes anywhere i need them to. Heck I even need him to jump start my car once and he helped me. lol Also enjoy PD a lot more cuz there is no pain involved in doing D. Ie being stuck with needles. Hmm what else mite be good for you to know? Oh there is the choice between manual or using the cycler..  Manual bags gives you the freedom of not being hooked to the machine for hours at a time. but for me, I don't feel as good as I do when using the cycler. The only thing with the cycler is that it does have a bit of a white noise when running. I don't hardly notice it and the only time I wake up is if it alarms. then you just have to correct the problem and start it again. But over all I have enjoyed PD and recommended it if your able to do it.

You have been on PD for 15 years??? Can I ask you why not a transplant?? How much longer do they think you can do PD?
Just curious.
Lisa

[Lillupie]

I think its totally worth it. Especially with less fluid restrictions and less food restrictions. And you wont get that washed out feeling like many people do after hemo. You pretty much feel the same everyday because you are dialyzing daily.
And you should only have one needle poke a month besides the EPO.
Lisa

[kporter85db]

... and they'll probably give you a 20 pound lifting restriction for as long as you have the cath.

Am I supposed to have a 20lb lifting restriction?  Opps, I don't remember being told that.

[Whamo]

It will feel like heaven to be able to enjoy a glass of a cool beverage without sweating each ounce of fluid.

[Grumpy-1]

Whamo  - Folks have given you a bunch of good info.  I've been on PD for almost 3 years.  Had a fistula put in but used it only twice before switching to PD.  Repeating what folks have said.  Freedom to set your own schedule (within limits) , You order your own replacement supplies monthly, You have to set up the machine each night (not a big deal), You can eat more food and drink more water,  You control via the strength of the dialysis fluid the amount taken off,  You need a space to store supplies.  (normally for me it is 40-50 cases a month), You can travel (you have to arrange to have supplies shipped to your hotel - not an issue - if you want more info on that let me know)   I completely love doing PD verse Hemo.  For me, I do 2 manual exchanges during the day (at work) and 4 exchanges on the cycler at night.  The cycler routine is as:  Hook up at 5pm - first exchange takes about an hour. Unhook and have an hour or two to eat supper, watch TV and such. - then rehookup for another exchange - again about an hour then there is a 2 hour dwell time another exchange etc. 

Again, if you want more details, let me know and write a book for you.      Grumpy

[JLM]

I do no manuals during the day.  Hook up at night (depending when I need to be done) I normally start at 10 pm.  I have 5 dwells for about 70 minutes with 2500 ml per dwell; then a 500 ml fill to carry for the day.  My total time is less than 8.5 hours.  I disliked the manual dialysis during the day as it didn't fit into my daily activities.

[deniferfer]

You have been on PD for 15 years??? Can I ask you why not a transplant?? How much longer do they think you can do PD?
Just curious.
Lisa
[/quote]

Yes next April it be 16 years. Well I can get a transplant but the way my life is now I'm not able to. But I also have a couple of feelings on that..one is I hope they are able to start cloning and be able to make one from my own DNA and save me from all the medications. The second thing is I'm OK on D and I know so many that its so hard to continue to be on it. So I feel like if I can wait that much longer then someone out there can have that kidney and be saved. I have set it up were I went on the transplant list and did my wait period and if something happens and I take a turn for the worse it puts me at the top of the list again. Making it so I could get one in a month or so. As for how long PD will continue to work?  I really don't know, I have hread that I have surpassed the odds of only like 5 years (I think) but I try to take good care of myself, eat right, make sure I don't get too many infections and live the boring life to be honest.   

[debra]

Hi Tito! How much are you charged to have your supplies shipped to Mexico?

[tito]

Hi Debra,

Baxter does not actually ship the supplies to Mexico - they come from the warehouse in Guadalajara, which is about a 4-5 hour drive from us in Puerto Vallarta. They charge a few hundred dollars or so, depending upon the amount I have shipped (Medicare or private insurance will not cover this). They package 6 bags to a case, so I calculate my need based on 4 bags a day. The shipping is not terribly reliable - they never ship when promised, but a day or so later. I usually keep a good stash on hand in my condo, so I don't worry. That's the advantage of owning my own condo, I can keep things stored there. I have been doing PD in Mexico for three years, and it works out quite well.

[Leanne]

My version of PD is not as great as the others here.  It was a nightmare for me.  I had trouble getting the fluid to drain and my tube kept getting stopped up with fibrin.  I never got to do it long enough to even get to use a cycler.  I had surgery once to unstop the tube and it still gave me trouble with draining the fluid, then it stopped up again and there was so much fibrin that the tube rubbed inside and caused a major abscess.  We then decided to have it removed and I have had trouble ever since getting rid of the infection.  They give me lots and lots of antibiotics but I guess they just don't kill it all the way and it seems to return.  My stomach has been cut open three times to try to get rid of it.  And it began bothering me again a couple of weeks ago and I had an ultrasound only to find that yes the infection is there again.  So I am back on vanc and gent IV to try to kill it again and have to see my surgeon in a couple of weeks to see if we need to go back in.  Also I got really sick to my stomach every time I put the dialysis fluid in my stomach no matter what the strength was.  It just didnt agree with me at all.  My neph actually thinks that my tube wasn't done properly to begin with because it always gave me lots of pain when I moved from the very beginning and that never really went away. I'm not trying to discourage you from doing it, just sharing my experience with you.  Hopefully if you choose PD you will have a better experience with it than I did.  I chose it because I could do it at home and I wanted a more normal experience for my family and it gives you more freedom than having to go to the center.  If it works you are supposed to be less tired than with hemo and have way more freedom as far as eating and drinking.  There is quite a bit to the cleanliness and precautions you have to take but we did fine with that part.  I wrote everything out and we just went step by step looking at our list so we were extra careful.  Our bedroom was cleaned top to bottom and we organized our cleaning stuff and sanitizers and masks etc.  To this day I still wish it would have went well for me because hemo is a pain and the financial squeeze for the trips to my center is really hard on my family.  Working it around Marcs job is hard as well.  I didn't like the tube either.  It was uncomfortable and aggravating but I would have stood that part if it had worked well.  But I suppose its like anything.  You just hope for the best.  Good luck with whatever you choose, I hope it goes well for you.

[JLM]

Leanne, I am going to have to do Hemo for a month or so after Hernia surgery next month.  The doctor is placing me in an extended care facility for the duration until I can go back on CCPD.  I am wondering , have you explored the home hemo option.  Mayhaps that would be the way for you.

[Whamo]

Thanks for the heads up.  I've heard war stories from long-time dialysis buddies that have "been there, done that" so I know it doesn't work for everybody.  I'm just so sick of hemo after a year I'm willing to give it a try.

[lmunchkin]

Whamo, I say why not?  If it doesnt work out, you know you can always go back to hemo!  Ive always admired ones who put forth the effort.  Youll never know unless you try it.  It is a very good modality. John did it for 5 years before doing hemo.

I say go for it!  Keep us posted okay?
lmunchkin

[Whamo]

I talked to the CAPD nurse, saw the machine, and went through a briefing.  I see Dr. Gomez soon to see if I qualify.  I have other health issues that may be obstacles toward CAPD.  I am excited about it. 

[Joe]

I love PD Whamo, and if there is anything I can do to assist, give a yell.

[billybags]

Whamo, go for it.