I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: kickingandscreaming on March 12, 2016, 03:21:47 PM
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And how often is it safe to use if there is swelling and fluid overload? I know that it can be dangerous to the peritoneal lining over time and can render it useless. But what to do if there is swelling?
I took the PET a couple of weeks ago and was told (no surprise, judging from my low and very low UF) that I'm a high average transporter. Everything I've read says that high average transporters should be on shorter dwells and preferable icodextrin. Neither of these changes has been mad to my RX. I'm starting to freak out because every day my legs swell and they're hard as rocks and feel really tight. I've been juggling solution strenghths and even using 4.25 about once a week, and even then I don't get much UF. I'm really worried that I'm a UF failure and that I'll have to quit PD. But no one on my teams seems to be in much of a hurry to try different routines.
I sure wish I could get on the cycler so that I could do shorter and more frequent dwells. But there's no cycler in the immediate future for me due to the shortage.
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Let me make sure that I understand this right.
No Cycler currently available so you are still doing FOUR manual exchanges daily.
Is it safe to assume your are using four greens daily?
I am not a Dr. All I have is three years experience on PD, and think I am doing fine. Or so my Team tells me. I used to do manuals with 4 hour dwells. When I went to the Cycler I was confused in that the machine only dwells from an hour to and hour 15 depending on hour long the total length of treatment and number of cycles and solution are programmed into it.
During the dwell the body is absorbing some of the sugar, reducing the difference in sugar between the solution and your blood. This difference is what draws the water from the blood into the solution. Decreasing dwell time and adding exchanges will help in keeping that difference higher and this should help draw more water.
You may have to ask you Dr straight out about using less time on your dwells and MORE exchanges if this will help take off this excess water without using the 4% solution. This may be inconvenient adding exchanges but can save your peritoneal membrane from the possible damage of the high sugar solution. The added cycles may not be permanent, only as needed until the excess is removed then revert to your normal routine. If the water returns then add that extra exchange.
Two more things.
How long are you ON your feet? Total time vertical, even sitting in a chair, adds to swelling of your legs. Is it possible to do your exchanges in a recliner? I have trouble draining if laying down so I would recommend that during the drain, but possibly during the fill. The time can add up throughout the day.
Lastly, do you wear support hose? Compression socks. If your swelling extends up past the knees into the thighs there are thigh high hose, otherwise knee-high should be helpful. I absolutely hated the thigh high when I was that bad, they were very uncomfortable and hot on me. And was thrilled when I was able to get to the point knee highs only were needed. Since then I have gotten even better and instead of the classic support socks I am now using the roll of tube material. I roll out a length from the back of the knee to the toe, cut it off and slide it on. Warm water wash, air dry only. If I am a bit soggy a couple of days and need just a bit more compression then I simply cut another tube and put on a second layer, doubling the compression. These are not as hot and uncomfortable as the knee high socks. More like wearing the leggings cut off a per of snug insulated under-wear.
I hope these measure will be helpful, and that your Team will agree. Between all these it should add up and help get the water off. Like I said earlier, this may not be permanent. As the water comes off and stays off you will have to watch your daily weight, morning and night to see your daily gain. You do NOT want to start going dry by pulling off too much as that will drop your blood pressure and will lead to dizziness upon standing, stooping over and raising again. Been there, done that, too many times. Though we did manage to reduce blood pressure meds a bunch as I became more fluid balanced.
Take Care,
Charlie B53
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Thank you, Charlie. Useful suggestions. I am (these days) using 4 greens, but with 4ish hour dwells. Not very long ago, 3 yellows and 1 green did the trick. But not any more. I do sit a lot as I am a computer professional. I stand a normal amount. The swelling definitely builds up as the day goes on. I see my doc and PD nurse this Friday, so we will discuss all this. I sure wish there weren't a cycler (fluid) shortage. I think I am a very good candidate for APD over CAPD.
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There was a shortage of cycler bags last year. There were a number of months my order would be short and I would get a second, sometimes a third, delivery. Many times by UPS.
But I thought they had managed to get caught up as I haven't been short for months.
Is there any way while sitting that you can raise your legs, a foot stool, or recliner? Any little bit will help to reduce the total elevation from below the heart can be helpful.
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I finally got hold of my nurse and told her what was going on. I am a high-average transporter. She changed my treatment routine so that I still do 4 full exchanges/day, but only dwell for 3 hours. And then I do a 5th drain and go to bed dry. So I'm not having the long overnight dwell. I felt like a ship that was taking on water and about to capsize. I have only started this new routine today, and only for the second half of the day, but I already see a difference. No negative UFs and much more positive UFs. No swelling to speak of. So I think this is the right direction. I even did 2 yellows and 2 greens. With more greens I should get even better UFs.
I can do some of my computer work in bed where I can stretch my legs out. But I'm not sure i'll need to with this new prescription. Time will tell.
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This is good news!
Yes, working in bed with your legs elevated WILL make a difference. You may not see the swelling that would normally occur while sitting at the desk.
Glad to hear those small changes can often make a noticeable difference in your overall comfort.
Take Care,
Charlie B53
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Glad to hear your positive news Kickingandscreaming
Love, Cas
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Thank you Charlie and Cass.