Edema that never subsides.. :(

[paryapta]

I was experiencing edema in several parts of my body for many months and I thought it would subside after I started PD. The reason they gave me at that time was protein deficiency. Before I started on PD, I had a second AV Fistular surgery on my left hand because my first one was thrombosed (however it still has the bruit). So I ended up with 2 active fistulars in my left hand. After this I developed venous hypertension (blood went too fast in the artery but could not travel that fast in the veins resulting in stasis) and my left hand was swollen horribly though there was no swelling in any other part of my body. Last Thursday, the surgeon ligated the second AV fistular hoping that the edema would subside. Unfortunately, the swelling is as bad as ever if not worse and now I also have edema in my feet, back and thighs. I am really frustrated. Even now I'm typing with an abnormally big left hand. Has anyone experienced this kind of thing and how can I get rid of this edema? I feel handicapped with my left hand swollen so much that I'm not able to even fold my fingers and make a fist. 

[austinsoul2011]

So sorry to hear of your edema problems.  My father has edema in his left foot and throughout his leg, and elevating only temporarily relieves the swelling in his leg whereas the swollen toes and foot NEVER subside.  It makes things very challenging for him too, and it gets even worse (and I never imagined it could) if he fails to drain properly after fills.  The constant elevation of his foot while sleeping does help, but as I said earlier, it's really only temporary.

One of the reasons I keep using 2.5% bags on my dad is to ensure he continually removes at least "some" fluid every night; that seems to have some effect on the swollen, edemic parts on him.  Some times I need to resort to 4.25% bags when the fluid overload is particularly acute, but I'm usually careful not to overdue the 4.25% bags (pink).

Maybe you can ask your nurse about using higher % bags to drain fluid out of you?  My dad's previous experiences with water removal pills like lasix were unpleasant and so we can't use them.

Take care and hope you can find some relief from all the swelling!

[highway61]

I can surely understand your frustration. I had serious edema in my legs before I started PD. I think my circumference on my legs were 19-21 inches. We used to measure it daily. Once I started PD it didn't seem to effect it at first, but once I got going on green bags for a week or so it started to drop. To excelerate it we did one red bag and went back to the green.

We dropped my edema quite a bit, I can't remember the numbers off hand. It was pretty good. After awhile we were able to put me on yellow bags with some occasional greens.

I agree with austinsoul2011 that you should talk about this to your clinic and see if you should change your solution. The 2.5, green, bags were fine for me at first. I did use a red, 4.25, to jump start my fluid drain. But do not make changes without talking to your clinic. You can become extremely, painfully dehydrated by pulling off to much fluid too fast. Trust me, we learned that lesson the hard way. It really hurt.

 

[Joe]

Ditto what highway said about pulling fluid off too fast. Getting dehydrated doing PD can really suck Do check with your center and see if they think using a 4.5 might help you get some of the fluid off.

[paryapta]

Ah! It so happened that I ended up gasping for breath every few minutes when I tried sleeping. I then went to the ER and my nephro instructed the PD nurse to put me on two exchanges of 4.5% bags for 2 hours each. And guess what? My edema came down drastically. I usually have a very good UF rate and apparently I had a UF rate of 1200 that day. I am glad to say my edema is gone gone gone!! 

You guys are genius and this shows that the members of IHD can really help novices like me with their knowledge! 

[austinsoul2011]

So glad to hear pulling off all that water helped reduce your edema!  Using the reds are a great fix when your edema's caused by dialysate absorption.  On the two separate occasions my dad suffered edema from absorption (due to long dwells), we temporarily had him on the red bags for about 2-3 days.  Each night he was pulling out 3000 mL of UF!  And right after seeing improvement we IMMEDIATELY dialed him down to 2.5 (green) bags to continue removing fluid (which was 2000 mL UF per night).  As a standard now, we do a mix of greens and yellows, depending on his weight fluctuations.  My nurses and the people here can't emphasize enough how important it is to consider the red bags as a very short term, temporary treatment!  From what I've read and heard, you can do some damage to your peritoneal membrane if you use the reds for a prolonged period.  And once you do that, PD is no longer an option.

BTW, you probably already know this, but if you're on a cycler the STAT DRAIN option is your friend!  I use it a lot on my dad when he's out of breath and wheezing due to feeling full, or when I want to give his scheduled drains a bit more "oomph."