2000mL fills too much! Can we reduce?

[austinsoul2011]

Hi all,

My dad's started manual exchanges (after Fresenius training) with Fresenius apparatus and 2.5% bags, and he's finding the 2000mL fills WAY too much for him.  He feels incredibly bloated and far too miserable to eat anything.  And that really worries us cuz he's supposed to eat more (proteins, fiber) to make up for the UF losses.  Can he reduce the amount of the fills to, say, 1500mL instead?  Or do we need to stick with 2000mL fills all the time, no matter what?

I wonder if there are periods during the day he's allowed to go dry; especially useful when he needs to eat.  Hope that won't hurt him...

Thanks for any advice!  Much love to y'all here.
-Steve

[MaryD]

I felt gobsmackingly full when I started PD, too.  My PD nurse said to do 1500ml instead of 2000ml.  That felt much better, and I was OK doing 2000ml at night.  Within a week or so, I could comfortably manage 2000 for every exchange unless I was going to do some gardening or similar activity.

As for eating - I now have 5 or 6 meals/snacks each day, as I don't feel hungry.  They are very high in protein snacks.  At least I'm eating and comfortable now.

[amanda100wilson]

He will essentiallybe changing his prescription if he decreases it so should run it by his nurse as this will mean thathe is getting less dialysis.  If this is an adequate amount will depend on his residual renal function and howmuch urine he produces.  1500 is notmuch, particularly for a man.  i was started on 2500 andi'm not that big but told that this is fairly standard.  Over time I did adjust it down and by the end of the time that I was on PD I was only doing 1500.  I had to do extra time and extra exchanges to make it work, but for a long time before I realised it, I was doing very well. 

[cassandra]

I agree with all the above. I did 1500 (quite tall) cos couldn't move or anything with 2000, and 1 more exchange. What's the point of having great bloods, and starving to death?

lots of luck for the both of you, love Cas

[jeannea]

I think you can probably try less, but you should talk to his nurse and get good advice. I can't do 2000 mL if I'm doing manuals. It just is too much. Maybe like someone said do less volume and more exchanges? Your nurse will know. Or maybe try the cycler. If the volume is while he's asleep he may not care so much.

[Willis]

You should talk to your nurse and doctor, but YOU (i.e., your Dad) are the patient and he is the only one who really knows how his body feels. He wants adequate dialysis of course, but perhaps he could do 1500ml fills and do one extra fill during the day or do a 2000ml fill (or more) while asleep. The PD clinic and staff are there for him...he is not their slave. The lab results tell the story in the end as to whether his treatment protocol is adequate or not.

As a personal example, I use a Baxter cycler for CCPD and my doctor wanted me to do 2500ml at night and 2000ml during the day. Now even as a newbie I could see that was ridiculous and even my PD nurse spoke up to say that wasn't going to work even with 6L bags (and normal for my clinic is 5L)!  Maybe the doc was having a bad math day? 

So my prescription was entered in as 2200ml for 4 cycles and a 1500ml fill during the day. Ummm, nurse? That still doesn't add up to less than 10L...so I just changed the last fill setting to 1200ml on my own without telling anybody. The next time the nurse reviewed the "electronic card" from the machine she noticed I had changed it but realized I had no choice and my labs were good so she was OK with that. Now after almost a year of this I've discovered that the bags might SAY they are 5L bags, but I think the volume varies from bag to bag by about 50-100ml and in addition the prescription neither fails to account for what volume is in the tubing nor that there is no way to get every drop out of the 2nd bag.  So for awhile I was waking up with lots of joint pain and stiffness, especially in my shoulders. Then one morning I woke up early and watched as the cycler spent about 15 minutes sucking air on an empty bag trying to reach the designated 1200ml (that morning it had filled just barely over 1100ml). So I just changed the setting to 1000ml for the final fill (which is way more comfortable anyway) and that gives the machine a 200ml buffer so it doesn't run dry.

When the doctor found out about this she was at first pretty adamant about my day fill being at 1500ml. I said OK, so we make the nighttime cycles smaller? Hmmmm, no she didn't want to do that. So she says we need to go to 6L bags...until the PD nurse told her they cost a lot extra (shipping rates more too)! Well, she said keep it the way I have it as long as my labs are good.

The moral of this story is that we the patients need to be proactive and assertive as long as any changes we make contrary to protocol is reasonable and can be explained. And especially if it comes down to money, the clinics are going to choose saving money (i.e., make more profit) over following standard protocol if they can do so without getting in trouble with company management.

 

[highway61]

I feel pretty full with 2000ml as well. I don't know if there is a specific reason that this is the amount necessary. I have also been having back pain that I attribute to have 2 Liters of fluid in my abdomen. But I haven't been doing this long enough to know for sure.

I would not do anything without talking to your neph and/or pd nurse first.

[austinsoul2011]

Thanks all for the responses!  Yes, my father is feeling way too full with 4 x 2000ml manual exchanges per day (min 4 hrs in between exchanges).  In fact, it's messed up the entire weekend and he's been feeling horrible the whole time.  He can't eat when he's bloated, and yet I'm sure he's losing a lot of protein.  I'll speak with his nurse about reducing these fills. 

I've been so worried about him these past few days; in-clinic dialysis was draining and tiring for him, and so this home PD was supposed to be gentler and kinder to him.  I'm hoping he'll start feeling better soon. 

I'm relieved he's complaining less of the pain from his still-red, still-inflamed exit site of his belly catheter.  I just have no idea when the site is gonna heal up and look less red -- and it's been just over a month since it was surgically inserted!  The nurses are also concerned, as it's not healing up as quickly as they were expecting.  I hope that doesn't mean anything serious.  He's still leaking a bit of pus (visible on the gauze), and that doesn't seem right.

I so wish it was me who was going through this, and not him.  That way I could just manage it all on my own, with the great people in this forum.

[lmunchkin]

Steve, be sure to take his temps often.  Temps are a great indicator of infections! Now from your post you said he is doing 4 exch @ 2000ml.  I agree with all to let nurse know, so that they can adjust script for him.  With PD, you definately need to let clinic know of his discomfort.  They will adjust his script and tweek here or there till he finds comfort level.

That was one thing about PD that was hardest for us to achieve was the Protein.  J could never get enough of it and as a diabetic, the dextrose was hard to control.

But PD is an excellent way to dialysis!  Once clinic adjusts his script and all find a happy medium, all will be good!  Just be steril, and please take temp often!

Know this is probably not the answer you are looking for, but hopefully it helps some!

God Bless,
lmunchkin
 

[billybags]

First of all welcome to the site.     Has your nurse done a swob test on the site? if not she should. It should heal up quicker than this and you should not have puss coming out of it after a month.. get back onto your nurse, I would not be happy until she did a swob. When every thing has settled down he will be fine with PD it is gentler. Let us know how things go.

[tbarrett2533]

Welcome to PD!!!

first of all, the GREAT thing about PD is you are now in control of kidney failure and your dialysis treatments!!!! 
so if you want to fill with 1500 ML then fill with 1500 ML just be sure to keep in contact with your PD nurse and neph.

I had this same problem the first 3 weeks or so of PD for me so I did just that went from 2000ml to 1500ml, did the 1500ml for about a week then was able to get back up to my 2000ml. 
 
good luck

[austinsoul2011]

Thanks for the advice, y'all!  With your information, and based on our nurse's suggestion, we've dropped the manual fills to 1500 mL and that's helped a bit.  My Dad's not feeling so bloated anymore.  And now that we're having Dad on a cycler, the nurse suggests 1800 mL cycler fills (cuz of short 1.5 hr dwell times), a last cycler fill of 1500 mL, then a midday manual exchange of 1500 mL. 

Man, the Liberty cycler does come with a few issues though.  I'll open up a new post for that.

Thanks!
-Steve

[*kana*]

They started me out at 2500 and I just had to get used to it is what they told me and so I did.  I now do 3000 per fill and do ok.   It is uncomfortable but soon he will get used to it and be able to tolerate more.  They once reversed my cycler tidal numbers and I double filled to 5500!!!  Talk about miserable.     

[bleija]

omg 5500 i think i would explode... i started at 1800 ml fill at my first clinic, transferred,to another clinic, they always teased me about my dialysis being baby dialysis, i did 4 cycles for 8 hours, with a last fill of 500. well long story short, i had to have my cath removed, and whne i started back my nurse told me no more baby dialysi we are all adults here, no that i have control, we are gonna do adult dialysis, so now i do 2000ml fills 5 cycles and 9 hours. dnt care for it, my kt/v are at 2.98, and they hvae always been right below 3... and they said they are looking for 1.7

[mcclane]

when I did PD, the hospital had a formula (dependent on your weight/height) to calculate the fill volume.  Mine was 2L, and yes I was bloated and uncomfortable.  However, I could be wrong on this, if you go down to 1.5L, it might not be enough to pull off the toxins from the body ?

I eventually did get used to 2L, but after a big meal, it was super uncomfortable.