extremely low UF

[midges]

I'm waiting for a call back from my nurse, but I'm hoping that someone here can put my mind at ease.
    I'm on APD and I usually do 1 6L green bag and a 6L yellow bag a night. My UF is usually between 600 and 800. This morning, however my UF was only 278 and I noticed that my abdomen felt uncomfortably rigid. I thought that I was just retaining excess fluid and didn't think too much of it. Over the course of the morning it got pretty uncomfortable and I decided to do my midday exchange a bit early. My last fill on the machine is 1500 and I usually pull off 1700 to 2000 on my midday exchange. This exchange I barely got 1500 off and though my stomach is not as hard, there is still a hard area about the size of my hand on my belly.
     Has anyone experienced anything like this? Is this weird, or just another thing that can happen in dialysis that I haven't experienced yet? I've only been doing APD since November.
     

[lmunchkin]

It's been a while since doing PD on hubby, but it does sound like you may have some fibrin clogging up in some way.  But definately check with your nurse.  It could be you may need to use more heparin in your solutions.

Let us know what they say.

God Bless,
lmunchkin

[midges]

I finally got a call back from my nurse and she suggested that I add an additional hand exchange using a green bag and try to position myself so that I can remove as much fluid as possible. If that doesn't work she's going to have me come in and see the neph tomorrow. I still feel uncomfortably full, but it does dissipate a bit when I lie down. I'll do another exchange in about an hour and hope that it makes a difference.

[lmunchkin]

I don't know how long you have been doing PD, but it could be the cath may need to be repositioned.  I don't know, but sure your clinic will find out soon!

Good luck & God Bless,
lmunchkin   

[Sydnee]

Midges have you noticed whether there is a position you drain better in?

My hubby (Ed) has when sitting he needs to be leaning back, when in bed he can't be on his left side but it works best when he is on his back. He drains the fastest and the most fluid when he is standing.
I hope you get it figured out without surgery.

[Joe]

My UF numbers coming off the machine have typically been low. I originally caught it up by doing a manual drain after my cycler treatment was complete. Now that I come off the cycler with a fill, I get the rest off with my manual drain in the morning. It's not unusual for me to get 3500 - 3800 ml off with that drain. Considering my final fill is set for 1800, I figure that's ok for my overall numbers.

[midges]

Joe, my UF is usually at least 500 and this morning it was only 278, so that's way below typical for me. Also, my last fill on the cycler is 1500, and I felt much fuller than that when I got up this morning.
     My nurse had me add an extra exchange, which didn't seem to do much. I put in 2000ml at noon (yellow bag) and only got 1500 off 5 hours later. It gets even weirder, because I also gained almost 3# in 5 hours and all I've had to drink today was a some tea, enough water to chase pills down and a small breakfast. I am also noticing that my stomach is even more bloated and tight when I am standing and the tension goes away almost completely when I lay on my back for a while. When I stand for more than 20 minutes or so, my stomach becomes rock hard and it looks like I'm in my 3rd trimester of pregnancy. I have a pretty long torso, so my belly doesn't usually pooch out too much, even when I am full of dialysate.
      I've tried all kinds of positions for draining, and nothing seems to help. It seems like I can drain about 2/3 of what's in and then it just stops coming. I don't think there is any blockage, because there's no problem with the fluid getting in. What comes out is clear and there is no sign of fibrin or blood, so I'm at a loss as to what's going on.
     Right now I have about 1500ml of green in and am just going to wait and see. I'll see my nurse tomorrow if my drain volume keeps being so much lower than what I put in.

[cassandra]

It's beenawhile, but I agree with Imunchkin that its likely to be fibrin. I'd try heparin.
Good luck midges

[Joe]

I agree with Cas and lilmunch, I'd put a dose of heparin in with your next bag. It won't hurt if you don't need it and will do wonders if you do. Not to get too graphic here, but how are your bowel movements? Constipation can cause you not to be able to clear everything out - no pun intended. My last issue with draining was caused by being constipated. They hit me with everything in the book to break me loose, which it finally did. Hope all goes well.

[midges]

Joe, I considered the possibility of constipation. I've been taking colace for 2 days and it hasn't made a difference.
     I also added some heparin to my bag and that didn't seem to help either. Drainage is still bad. My initial drain last night took over an hour and I still had to bypass. I only got about 1200 out on my initial drain last night, and I carry 2000. I am definitely getting out way less than I have been putting in and it just seems to be getting worse. I am gaining about 3# a day at this point. Weirdly, my bp is really low and my nurse wants to decrease my bp meds. I don't have any signs of fluid retention other than my big fat belly. My ankles and wrists aren't swollen, I'm not having any trouble breathing-- it's all staying in my belly. Did I mention that my stomach gets painfully hard and swollen if I stand up for more than 5-10 minutes. The only relief I can find is when I lay on my back.
     I'm going to see my nurse today and hopefully we can get this resolved. I'm afraid I just might explode if we don't get this sorted out. Pray that we figure this out.
     I'll keep y'all posted.
     
     

[Joe]

Midges, colace is a stool softener, you need something to make sure you are clearing your system. To get my system moving again, I doubled up my MiraLax to two doses a day, took colace morning and evening and even used an enema. By the time we were done with all that, I was clean as a whistle, and my drains were back to where they should have been. 

Bottom line here is don't give up, it may still need some help.

[blondie1746]

Midges, do they think you are absorbing the dialysis fluid?  When I first started out, I was trying yellows and greens, but couldn't drain out what I put in.  And, of course, I had swelling in my feet and ankles.  They moved me to reds, and for the long dwell during the day, I had to use purple.  After I had a stem cell transplant (and had to do hemo in the hospital for 3 weeks), I was able to move down to greens.  The higher solutions were pulling too much fluid off.  I tried moving all the way down to yellow, but everytime I did, the alarms would go off because it wasn't pulling off as much as I had put in.  I have been happily using greens for a year now. 

[highway61]

Back when I was on PD, I have had a new bean for a year now, I used to go through periods of low UF on the machine too. I used to try Heparin first and that often cleared it up. On my days off I would supplement with manual drains on my days off. That helped a lot. Don't be afraid to use heparin, I had to use it quite a bit.

[midges]

Ok you guys, this is just getting worse and I am getting more and more frustrated and uncomfortable.
     I went to see my nurse yesterday. We did an exchange in clinic. I pulled off about 1200 (this is from a 1500 fill) and then we did a fill with a red bag with 2cc of hep on board. The neph also prescribed me 30ml of lactulase (laxative) twice a day.
     I had 2 doses of the lactulase yesterday. That worked very effectively almost immediately. I am pretty sure that the pipes are clean at this point. My initial drain on the cycler last night was a little more than 1600. Better than it has been, but still not so great considering I was carrying 2000ml of 4.25. I've only been on pd since December, and up until a week ago I was still getting really high yields from yellow and green bags. My overall uf was over 300, (green/yellow) but still very low for me.
       I should add that my belly is getting more and more bloated with each exchange. It's pretty uncomfortable and makes sitting up and bending over pretty hard. I still have no signs of fluid retention elsewhere. My ankles and wrists are still fine and I am not having any trouble breathing. It's just all in my belly, and for every 2000ml I put in, it seems like the most I can get back out is 1500 or so. I gained almost 5# between noon and 5 today, and that was with one meal and 2 glasses of water. My blood pressure has been pretty ok until this afternoon, but the last time I checked it was 144/90. Not super high, but not good either.
     Today my nurse is having me add 2 extra daytime exchanges with short (2hour) dwells with 4.25%. I'm only carrying 1500 because I'm running out of room and it's pretty uncomfortable to hold more than that. My nurse is talking with the back up neph (my regular guy is on vacation) and they'll probably have me come in for x-rays in the morning.
     Does anyone have any idea what more I can do? I think constipation has been ruled out at this point, and I've been on heparin for 3 days, so I don't think it's fibrin either. My nurse wants me to connect to the cycler like normal tonight, but I don't think I can even stand a fill to 2000. Already my belly looks like I'm in the 3rd trimester of pregnancy. What do you think?

[cassandra]

Oh dear midges, I so wish I could give you some good advice. I'm sorry I can't think of any thing. I hope they can sort you out, or someone with more recent experiences will come up with some good advice. I'll be thinking of you, and wish you all the best,

Love Cas

[midges]

Thanks, Cass. I am just so exhausted and hope that I can get this sorted out soon.
      My nurse is having me do exchanges every 2 hours with red bags. It seems to help some, but I am still almost 20# above my dry weight and getting very little drainage on the cycler. Since heparin and laxatives didn't work, the neph is going to have me go to the er tomorrow and flush my catheter with a drug that is stronger than heparin to clear blockages. Hopefully that will do the trick. Otherwise, I think we will have to start exploring surgical options. Please cross your fingers for me and hope that this works!

[Sydnee]

A few months back someone posted they were having problems draining all their fluid. After several test they found a pocket of fluid that the catheter couldn't get to. I can't remember the details if the ER visit doesn't work might want to look into it.

[newgrl]

Midges,

I had something similar when I tried to do PD.  They could put fluid in but it would not drain.  The more they put in, the bigger  stomach would get.  And it was hard as well.  It turned out that the catheter was clogged.  They had to remove the catheter and I ended up getting a graft for hemodialysis.  I had too much scar tissue to place another catheter.  I hope they are able to resolve your issue. 

Newgrl

[midges]

newgrl, that sounds exactly like what I'm experiencing. I'm hoping we can get it cleared tomorrow. If my trip to the er tomorrow doesn't work, I think we're going to have to start to consider more invasive alternatives. I really dread the possibility of surgery or having to go back on hemo.

[midges]

For anyone who is keeping track, there is no improvement in my situation.
     Yesterday the doc injected 5cc of a clot busting drug into my catheter. That did absolutely nothing. My initial drain last night was barely over 500, and that took over an hour and a ton of alarms to get. Total UF this morning was *27*. It seems like the only relief I can get is by doing exchanges every 2 hours with 4.25% solution. Even then, I only get a little more than what I put in out.
     Oddly, my labs are really good, so I am getting some benefit from dialysis. Yesterday my creatinine was 6.2 (pretty normal for me) and my potassium was 2.9. So it seems that even though I am super bloated, my blood is still getting cleaned somehow.
     My team seems to think that we have exhausted all the non-surgical options, so we'll be consulting the surgeon Monday to see what can be done. My nurse seems to think that even if I need surgery, I might still be able to continue on pd. Keep your fingers crossed for me. I didn't have a good time on hemo at all and I definitely don't want to go back to it.

[billybags]

Midge, I feel for you, it is not good when you can not get a good drain. As you say , no constipation, no fibrin, has the tube jiggled around in side, some times they flip over. Have they done a scan to see where it is laying.. My husband has been on PD for about 4 years now and his catheter sleeve is showing through he had to have it shaved off last week, hope fully the cath will stay in. He like you is dreading having to go back on hemo , with his heart it did not suit him either. It sounds like they are exploring all the ways of getting your cathgoing properly, so fingers crossed.

[justme15]

When I had problems draining I eventually ended up in surgery. The catheter was entangled in my fallopian tubes!  After they resolved that, my catheter works fine!

[midges]

I really appreciate all the feedback from everybody on this thread. This has been really tough situation and this board has been really comforting.
      I decided, and my nurse agreed, that it would be ok for me to take a break from pd yesterday. By yesterday afternoon I was basically not getting anything out and, needless to say, it was getting really uncomfortable. So I did a drain yesterday around 4 (only got 1100 out after a 1500 fill) and didn't put anything in. I also skipped going on the cycler last night.
     Overnight I actually lost a lot of fluid from peeing. I had to get up twice last night to go to the bathroom, and that hasn't happened for me since before I went into the hospital last Fall. When I weighed this morning I had lost more than a pound since last night and the tightness in my belly was gone. I talked with the nurse and she told me to do a fill with a red bag and hold for 2 hours. I just finished the exchange and got a UF of 800! I don't know what happened, but it seems like whatever the problem is it somehow worked itself out. I'm still going to go see the surgeon this afternoon, but it looks like my problem might have worked itself out.

[billybags]

 midges, that sounds more positive. My be your cath had flipped and then realigned its self. Fingers crossed.

[midges]

billybags, I think you might be right. When I saw the surgeon Monday he wanted to take a wait and see approach. My drainage continues to be good *knocks wood* and it seems likely that surgery won't be necessary. I am still carrying some excess fluid, but I'm losing around a pound a day so I hope to be back to my normal weight by the end of next week or so. I'm just keeping my fingers crossed that things keep on going well.