I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: cosmo on May 20, 2013, 08:35:33 AM
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DH is on PD since september. for the past 3 months, the fluid just doesn't want to come off. he's put on about 20 pounds in the last month. can that be actual weight or does it sound like fluid to you? dr and nurses don't' seem concerned, but we go to the dr again tomorrow. pain all across his back, he can hardly walk. we're doing manual exchanged during day then changing to the baxter cycler at night. night UF runs around 3000, so you'd think the fluid would come off. anyone have this happen or have thoughts? i realize we're not medical experts here, but any thoughts are appreciated. i'm such a noob at this.
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ya know cosmo ('s mom) ;) I would think it's fluid... I tell ya why i think this ;) The part of the 'speed' of it being put on for one, but the pain across the back, well, i just learned this reciently, but across the upper back is where water is stored. OUr neph showed us one time and i freeked out!! his legs had quit swelling, but it went to his back!! It's so weard where it can switch to. There was a lady when we were in center that came in once and i didnt know it was her. Her face was so swollen she was unrecognizable. Hubby, well, he once carried it in his.......... hum, how shall i put this.. oh i know,,, sack :) lol It was really a tiny bit amusing even to the dr, though he laughed and said he has seen worse...lol I know this isnt really a laughing matter, but personally, i would talk with someone else about the possibility it's fluid. The fluid gets hard on the heart.. best of luck w/this
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What does DH mean?
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What does DH mean?
usually "Darling Husband"
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cosmo, It does sound like fluid to me. Is your hubby restricting his fluids? What goes in should come out with a bit more. ( 1 litre in, 1 and a bit out) What bags are you using, he could well be absorbing the dialysis fluid through the day. Please get your nurse to check things out, my be tweak your regime.
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You know, it's strange. I've been getting good UF results from the cycler (1000-2000 a night, which is my average), but I've noticed some weight gain, too. Actually, I've noticed manboobs, and I attributed them to medication. Maybe it's fluid? Does fluid go there? Reminds me of the Seinfeld episode where Kramer and George's father come up with a man bra! With all my other problems, I don't need this! (isn't it ironic, this thread was started by Cosmo, as in Cosmo Kramer!).
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Ed's been on PD since August, in January he gained weight (water weight) we didn't know at the time. He was getting good to really good UF #s. At clinic the nurse was really concerned, the dr was only a little concerned. Mainly since Ed felt good.
They put him on a diuretic (which just crippled him with muscle cramps) and had him do a manual exchange with 4.25 it only pulled a 432 UF, less than both the 1.5 and 2.5 do. Everyone was puzzled what to do.
Ed started doing 2 manual exchanges at work and that seemed to help a lot. Along with the 4 at night on the cycler.
He is back down and has been for 3 months now. He again only needs to do 1 exchange at work. No one knows what happened or why.
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sounds like water weight then. he does 1-2 manual exchanges during the day, usually 4.25 and at night on the cycler 4 exchanges of either 2.5 or 4.25 (although lately mostly 4.25). see the neph tomorrow and we (I) will be asking these questions. thanks so much for all your help
Cosmo is the dog you see as my avatar. we lost him last september. he was named for cosmo kramer! :beer1;
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I'm sorry you lost Cosmo :'( Actually, Tito was the name of our little black and white Cocker we lost about 10 years ago. He was a smart little boy. He was named after Tito Puente. Our present dogs are Celia and Playa, both Cockers. Playa comes from México!
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try measuring what fpgoes i. as well as out, to see if,theremis,a discrapancy. Definately fluid weight if it has been put on rapidly. Another guage can be BP. A higher yhan usual BP can also signify fluid gain. Doe she restrict salt iintake? too much salt can dranaticaly increase the amount of fluid that iis held onto. has his urine output devrease? Maybe something else worth measuring? Residual renal function or more precisely a decrease in it. can have a huge impact on fluid balance. It could be a combination of factors. However, the renal unit and nephrologist SHOULD be taking notice of it. Thatt amount of extra weight puts a strain on the heart. Reiterate your concerns and if they do not come up with a strategy, It may be time to llook for a new nephrolgist, and/or dialysis unit. They should be giving you this advice.
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There is expected weight gain doing PD. Thought I would just give you an idea of someones PD prescription.
I use 15 litres of fluid a treatment. 2 - 1.5 bag and one 2.5 bag. One treatment is 10 hours.
I run a 60% tidal and fill to 2100ml that puts me at 10 cycles. I dont drain fully so the machine drains me of 60% of the fluid and fills me back up with 60% new fluid.
I do this 7 days a week till my first kt/v test.
Just what I am doing to give you an idea.
Cheers,
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there is not expected weight gain, jjneyjr. Since you are doing tidal it is expected that you will notbe at your drain weight because your peacription is set to tidal. not everyone is.
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Page 5 of this
http://www.kidney.org/atoz/pdf/nutri_pd.pdf
and my nurse said to expect some.
Cheers,
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we saw the neph and he said it's definitely about 20 pounds of water weight. he recommended that we do 5-6 manual exchanges during the day with 4.25 (one hour dwell time) until friday and see if the weight comes off. DH lost 9 pounds yesterday but had crippling cramps across his back and shoulders. today we're doing 2.5s but the weight's not coming off as dramatically. we still do the PD cycler at night.
fortunately i work from home so can help him with his rapid exchanges. he finally realized yesterday that he was drinking way too much fluid. :Kit n Stik;
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that sounds as if the fluid removal is too rapid, hence he cramps
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definitely too fast. his bp was 98/75 this morning. i freaked out and called the pd nurse, without DH knowning. i feel guilty now, but i was really worried. they said call the dr today but it was nothing to really worry about. god i hate this! :stressed;
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There is nothing wrong with a caregiver calling if something doesn't seem right. I agree with other, it is fluid gain Unless DH is eating like a pig. :rofl; Over the last 3 months or so, I gained weight slowly - no one really worried about it until it put me in the hospital last week. They took 11 liters off via dialysis and 1 1/2 liters drained from my lungs. (that is where my extra fluid goes - I think). As said, check BP and weight they hand in hand. Grumpy
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I weighed 224 when I started PD a little over a year ago. Recently I got up to 253. Some of this was bad diet and I know the PD solution alone adds calories but some of this is fluid because it comes off fast if I watch my fluid intake. I can lose 10lbs in a few days just from being careful what I eat and drink. One thing I have noticed is if I don't watch my salt intake I don't remove as much excess fluid with the 2.5 bags. This makes sense because the body retains water when you intake a lot of sodium but I've asked my nurses about this and they just shrugged. I'm confused because I was told to make sure to drink plenty of fluids on PD and nobody told me to watch my fluid intake. I've had to learn this on my own. I still produce quite a bit of urine but I do notice my hands get puffy and I get swelling in my ankles when I'm not watching my fluid.
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Battlescars, Not sure why your nurses would shrug their shoulders, since sodium does result in you holding on to fluid. Your goal shhould be to cut back on salt not fluid intake. However, you may need to also cut back on fluid intake if this oesn't do the trick. Salt also makes you more thirsty which will also make you want to drink more. How is your adequacy and have they done a recent PET to make sure that you have not lost efficiency in your peritoneum.
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I've had the PET done a few times since I started and everything looked good. I'm due for another test next month. I've had this problem since the beginning and it took me a while to notice the salt intake problem. My clinic isn't the best, I'm actually thinking about finding new care.
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Been thinking about this topic lately. I was on PD for almost 3 years - normally weighted in at 245lbs + or - a few. Then in Jan came off PD due to infections, weight still about 245lbs. Then last week I ended up in the hospital not being able to get my breath. Over the course of 3 days they removed (via dialysis) 11 liters and another 1 1/2 from my lungs. My dry weight dropped to 215 lbs and I'm now down to 210lbs. SO I now think that the PD sessions were NOT taking enough fluid off. I'm work toward getting back on PD because it fits my life style better than in house hemo. Haven't considered home hemo yet, as I don't think my wife (caregiver) could handle sticking me and I'm not that greatly thrilled with needles. When I do get back on PD, I think I try using 4.5 fluid more and less of just 2.5 fluid. We'll see how it goes. Grumpy
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Grumpy, careful with the 4.25 fluid. Using it once in a while is ok, but it's really hard on your Peritoneum. Using it consistently will shorten the time you can do PD overall. I do a 4.25 about once a month if I feel like I'm retaining fluid. And the way I determine that is watching my dry weight; if it goes up by 3-4 pounds in 24 hours, it's fluid weight. Running a 4.25 manual typically takes it off very quickly.
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I agree with Joe.
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Thanks Joe and Billy. That is good to know. In the past I had 4.5 bags but never used them. Will be carefull when and how much now. Thanks again Grumpy
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Battlescars, the more I read about your clinic, the more I think that it is time to,find another one.
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Thanks Joe, good information. My weight has been stuck at 240 lbs, but just recently it started to go up, had trouble going to work and found my self short of breath. At my last visit convinced my Japanese Doctor to please let me have a few boxes of the 4.25 he agreed and I also asked to do some hemodialysis that day. Spent 3 hours hooked up and didn't enjoy it. Did take off over 3 liters of water, Doctor suggested I come in weekly for hemodialysis, I told him not yet let's see what the extra strength fluid does. Also my latest PET shows me as a Low Average, don't quite know what that means and I don't speak Japanese and my Doctor speaks little English. Love this site so my information and helps keep my spirits high. :banghead;