To PD or not to PD. That is the question.

[Lexxtech18]

Hey guys! So, first off, I'm really enjoying my time here on IHD. You all have been a great help in answering any questions I've posted and making me feel a part of the dialysis family. So thank you for that!! 

About a year a go I was on CAPD for little over a month. I took all the time of attending the training and had the little machine that dialyzes you at night (I forget what it's called now) installed in my apartment. There were many complications that went with it, including I had no room for all the boxes of dialysate in my tiny apartment, my work wasn't considerate enough to give me extra time during the day to fill and drain, and so I was absorbing a lot of the fluid making it harder and harder to remove. Plus I had body issues with the catheter and... all in all it just wasn't working with my lifestyle at the time. BUT! Now that I'm back at home with the 'rents there is plenty of room for the boxes, I'm working at a much slower paced hospital now so I'd have lots of time to fill and drain as needed, and I'm not really looking to date so body issues aren't much of an issue.

My blood pressures have been extremely low, especially during dialysis and my graft (that I've had for a good 4 years) is having to be worked on more and more. So I'm asking you fine people for your two cents, your opinion. Do you think it would be more beneficial for me to start back on PD, if only so the side effects of HD stop haunting me. I'm hoping to get another kidney transplant within the next year or two (crosses fingers, eyes, and toes) so maybe PD wouldn't be such a bad idea in the meantime? I am young, 25 years old.

What do you guys/gals think?

[Willis]

I work full-time and do PD on a Baxter cycler. I am fortunate to have very flexible working hours. I too was having problems re-absorbing most of a 1L day fill. I recently convinced the neph to change me to Extraneal for my day fill and now I'm getting a positive UF with my initial drain before going on the cycler. Also, the Extraneal has a lot fewer calories in it compared to the regular dextrose solution.

 

[Lexxtech18]

Really? That's awesome! I've not heard of Extraneal. So it's a special type of solution? I was doing a lot of "reds" because I always had so much fluid on. The PD nurse said it was not good for me to be using that many reds in a week's time.

[Willis]

Yes, the Extraneal is a different solution. It's "Purple" and listed as 7.5% but it has a completely different chemical makeup. I'm no chemist, but supposedly the molecules are much larger than the regular dialysate and don't pass back into the peritoneum as easily. From what I read, Extraneal was designed for dwells of 8 or more hours. I've gone for 18 hrs on Extraneal and still had a UF of only -80. Usually now it's +50 to +200. With the regular dextrose solution my UF on the initial drain was usually -600 to -500 ml. It's one more bag to deal with but the bags are 2L and come 6 to a box like the manual PD bags except they don't have the extra drain bag.

 

[Lexxtech18]

Thank you so much for the information! I will definitely ask about it if I decide to go back on CAPD. It sounds like it might be a solution for my re-absorbtion problem. It was hard having to fill/drain every 2 hours because I was taking in as much as I was taking off. So in my consideration to restart PD, that was my biggest concern.

[Riki]

I used the Baxter Home Choice cycler as well.  With it, I didn't need to do any daily exchanges.  You can even mix the solutions (start off with one percentage, and have another mix in) so you take off more at the beginning and less at the end, the same as the hemo machines, or you can do it he other way around if you need to keep some.  The Extraneal (it's also known as Icodextran, not sure of the spelling. *G*) is generally a last fill, and it stays in all day long.  I couldn't use it, as it would dry me out.

I spent 6 years and 4 months of my life on PD, and I will sing it's praises to anybody. *G*

[RichardMEL]

I preface this comment with the note that I've never done PD and am not a candidate to do it should I need to do D again (which is likely at some point it would seem). My poor eyesight and co-ordination make it a bit scary in terms of infection and stuff, or that I might accidently hook up the cat, that it's never been an option for me...

That said... I DO know people who have and are doign PD and honestly believe it allows more general freedom in life - specially using the cycler overnight. Consider compared to hemo - you have more regular D, so lowers the overall level of toxins in the system which not only allows more freedom in diet (and fluid intake!!) but also should  make you feel better overall and more able to tacklle things like working more fully.

You can devote days to doing what YOU want rather than having to give up hours of a day to do in-center hemo (which can leave you wiped out) and is I think a bit easier than somehing like nxstage at home, though that's more of an even match I think.

Obviously you have the risk of infection and stuff doing PD, but I think the freedoms it affords (and you can take the PD stuff with you, arrange for supplies to be delivered places you might go etc) so overall it does seem like a form of dialysis that would enable more of a "normal" type of life.

One of our very own members has done PD for over 15 years and done so very well so it is possible to do long term PD and thrive in my view.

[Lexxtech18]

That's what I was doing when I was on PD. They had me fill once for the day, hold it and then cycle at night. Well, we found that because I was re-absorbing the solution during the day, I had to drain/fill almost every 2-3 hours in order to not put on anymore fluid PLUS cycle at night. It was a pain with work, so that's one of the main reason I went back to hemo. But it's starting to really take it's toll on me and I'm afraid with my blood pressure always being so low I'll end up losing my graft sooner rather than later. It's already 4 years old. :/

[RichardMEL]

I'm really sorry I missed that part about the filling and all that. yeah that is a real complication....

I wonder if there would be any way to solve that problem? have the docs said there is nothing that can be done about whatever is causing that?

so you have a graft as opposed to a fistula? mmmm 4 years is good but maybe it can last a heck of a lot longer.. you're young... why not?

however yes, hemo can definitely take a toll - specially when you've been used to PD.

[Lexxtech18]

Well, I was only on PD for a month or so. lol I hadn't really gotten used to it yet. I wish I could have. On the good days I felt great! Wasn't tired, blood pressure was awesome, all the things that make Hemo hell. I'm going to talk to my unit, I'm not even sure they provide PD training. But if they do I would like to give it another go and maybe that Extraneal solution will help with my re-absorbtion problem; it sounds like it's helped lots of other people! 

[deniferfer]

I really think you should try to go back to PD again. I have been doing it now for 15 years ( I started when I was 16) and I have found that it gives me a lot more freedom during the day. I have been lucky that I don't absorb the fluid i would have in me during the day so I can see how that could be a real problem to have to do a exchange in the middle of your day. Well the best thing i can do is give you the positives VS the negatives that I have found while i have been on it.   

The positives for me is I'm able to do it from home, I like that I have more freedom to eet and drink what I want, It is better for your body cuz your cleaning it everyday, not being poked with needles, when your done with your treatment you don't feel wiped out and tired, it is easier to travel with PD (just have to pack your supplies), oh also it is easier on the body over all.

The negatives, Well one of the main ones is the risk of getting a infection but you do have some control over that in just keeping things clean when you hook up. But i have even gotten some that I have no idea how it happen. You do have to do it everyday and your responsible to set up and do the work there. For me it has just become part of my everyday life and no big deal. Lastly would be when the machine alarms and have to wake and fix the problem and shut it up.  But other then that i have had no real problems on it and really liked it.

In fact right now i'm doing HD just temperately due to the fact they have to do surgery to remove a ovarian cyst and I miss PD. I don't like HD at all!! I'm tried and wiped out afterwards, the fluid restrictions are drive me nuts. lol to me it is hard to be tied to that chair for three hours then to do PD for a longer amount of time but I was on the computer,watched TV or slept. LOL

I wish you the best luck and I do hope if you choose to go back on PD that it works out for you. If you have any questions feel free to ask me.       

[Joe]

I have to side with deniferfer with what she has said. The only different thing I will add is that when I come off the cycler in the morning, I have a 2L fill in me. I let that dwell for three hours, then drain it off and am empty for the majority of the day. I do a 2L fill in the late afternoon, dwell for 3 hours then connect for the night. Not saying this is perfect, but it might help alleviate your absorbing fluid during the day. Just a thought.

[MaryD]

I do CAPD - 2 yellows, and a 14-16 hour icodextrin. I don't produce any fluid when I'm on the yellows, but usually 1 litre with the icodextrin.  Yesterday my yellows were increased to three a day, and there is a general muttering that I should think about doing APD instead.  Perish the thought!

[amanda100wilson]

Icodextrin is the other name for Extraneal in case antone is wondering.

[Lexxtech18]

Thanks for all the information, guys!! I have already expressed my interest in going back to PD to my dialysis unit this morning and they emailed my neph. He's supposed to get back to me next week and see what we can do about getting a line in and training! 

[Willis]

OK, your next issue will be WHERE to put the PD catheter. I've always sleep mostly on my right side so I had the cath exit site put in on the left side. Now when I do occasionally roll over on my left side it pinches me enough (even after 2 years) that I can't sleep like that.

Also consider your waistline and where you would normally wear a belt and make sure the exit site is above or below that or it will be a constant irritant. In my case I think if the exist site had been 2 inches lower it would cause me less irritation from my clothing.

 

[Joe]

Good advice Willis!

[Lexxtech18]

I'm afraid I have some bad news, folks. Saturday night I went into the ER with chest pain, palpatations, shortness of breath, headache, etc. And I was diagnosed with chronic right-sided congestive heart failure. CHF can lead to fluid pooling in the stomach/peritoneal cavity and ankles/legs. I have noticed a bit of this in myself lately... I'm afraid the high possibility of ascites will keep me from doing PD again.  We'll see what the neph and cardiologist say about it. I'll keep you updated.

[Willis]

 

 

[Lexxtech18]

 

Exactly how I'm feeling at the moment. If it's not one thing it's another. 

[deniferfer]

I'm so sorry! I really hope it all works out for you. 

[Lexxtech18]

Good news! I talked to the Nurse Practitioner for my unit about doing PD even though it's possible I could develope acsites, and she said that is sometimes how they treat ascites so it would be a good thing to do! She agrees that hemo is taking it's toll on my body and that PD would be much better for me in the long run while I wait for my sister's kidney. *crosses fingers, eyes, and toes* I hope so! I could use some good luck right now. 

[MaryD]

   That's excellent new     

I can thoroughly recommend PD

[Jonndad]

Good news! I talked to the Nurse Practitioner for my unit about doing PD even though it's possible I could develope acsites, and she said that is sometimes how they treat ascites so it would be a good thing to do! She agrees that hemo is taking it's toll on my body and that PD would be much better for me in the long run while I wait for my sister's kidney. *crosses fingers, eyes, and toes* I hope so! I could use some good luck right now. 

I wish you all the luck in the world.  John

[Riki]

sending you a crapload of positive PD vibes.... *G*