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KICKSTART
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« on: June 03, 2010, 01:23:10 AM »

Im having a big problem with fluid removal , it just doesnt want to leave me ! I have tried every program on the machine ..profiles, loop, straight pulls, nothing seems to be helping ! Im not overloaded as such, through drinking too much, but more its hiding in my tissues! I am getting to my dry weight every session and every session they drop it a touch more. But what happens is ..i go in ,do my session and come off ok , bp down, i can get down to a bvm of 84 if need be. But within a couple of hours of getting home im filling up again. When i say filling up, all the fluid starts to settle on the trunk of my body , my legs etc are fine, it my body it settles on. Ive been on profiles which give you a rest so the fluid can transfer from tissue to blood, but im still not getting rid of it. Ive been told by the nurses that it can take up to 18 months to get it all out of your tissues !!! and that ex pd folk are the worst for this !  Does anyone else suffer from this? a few hours at home and i feel like ive not had dialysis my stomach starts to bloat and i start to feel slightly overloaded as the fluid transfers from my tissues back into my blood stream.
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« Reply #1 on: June 03, 2010, 03:50:16 AM »

Are you really diligent about avoiding salt and other forms of sodium, KS?  That can really make the body hold on to fluid.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
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« Reply #2 on: June 03, 2010, 06:38:36 AM »

KS...hubby went through this too, his neph called it "third spacing".  The fluid would collect in his tissues and not come back to his vascular system to be dialyzed out.  The key seemed to be his albumin levels.  After almost 2 months, we got his albumin level up a little and the fluid started coming off.  You might want to talk to your neph about "third spacing". 
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« Reply #3 on: June 03, 2010, 07:13:07 AM »

You can ask for a PUFF..... I can't remember what it stands for.  I know you hate going in and a PUFF is where you "go in" for an extra session.  They just pull fluid.  No toxins are taken off just fluid.  It gets you an extra 3 liters off and you will feel so much better.

They have to do it if you request it, but they won't tell you about it.
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« Reply #4 on: June 03, 2010, 02:52:06 PM »

Thanks guys  3 different answers ..lol.

Monrein ..never used salt,never have !

Looneytunes.. Albumin levels normal !

Rerun ..yes i know what you mean , we dont call it PUFF over here , but we dont have to request it , they will do it if you show signs of overload. The problem is , this would be no good for me as the fluid is not in my bloodstream , its in my tissues , so it could pull till it was blue in the face !  I have been told its a common problem for people that have done PD previously , it seems we just like to hold on to that fluid!
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« Reply #5 on: June 03, 2010, 06:51:05 PM »

But if you go in an extra time the fluid has had time to shift to your blood stream.  OK you may only get an extra 1.5 liters off but it is between sessions.  You said that a few hours after you get home you feel swollen again.  Well, go in the next day and pull until you are blue in the face.  It will get some fluid off and that is better than fluid on your lungs in a few weeks.

It is worth a try.

Another suggestion is nocturnal where you pull fluid slower but for 8 hours, but I think you said you don't have that where you are.

Hope you get some off soon.
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« Reply #6 on: June 03, 2010, 09:33:10 PM »

ok, this may not be right for anyone else, but for us what happened was........ hubby was retaining water. WE had gone drastic NO salt and his body (like someones going on drastic diet) took to holding onto the little water thinking it may not get more. (i know, sounds weard)  He started exercising just before dialysis to get the fluids into the blood so it could be taken off, having a pinch of salt to trick the body into thinking it was getting salt now, and he started loosing the fluids.  I sorta figured that out and asked the tech and he agreed i was right.  He continued to loose it and is now very comfortable and dry weight.  You can still barly feel it on his shin bone but dr said that's the last to go in some.  Anyway, ask about the exercise thing just before since your already a no salt person, and see what yours has to say.  just a suggestion that worked for us  ;)
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« Reply #7 on: June 04, 2010, 01:02:06 AM »

Thanks guys ..the salt thing is interesting but i bet if i ask on the unit they wont know anything ! doh!

Rerun , sorry i understand you now , alas we dont have the luxury of doing 'extra' shifts !! or even changing shifts!  The annoying thing is my bvm is low when i come off , i went down to 84 yesterday ,my bp is decent, my legs are like matchsticks  :rofl; , its just on the trunk of my body it sticks to ..i kinda look like i swallowed a beer barrel !  I thought pd was bad enough when i did it and did hope to lose that tummy when i started on hemo. One of the sisters on the unit said fluid makes a bee line for that cavity now because pd created a space and its the easiest place for the fluid to go now !
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« Reply #8 on: June 04, 2010, 06:19:03 PM »

I've had trouble getting fluid off for a while now and I'm just now starting to get it off. I've been going in for the past few weeks for extra fluid removal. At first it was everywhere, my legs, my arms, my hands, and my face. My dry weight was almost 50 and they wanted it down to 41. Since it has been coming off its mostly been collecting in my thighs and in my waist, I call it my Buddha belly, but at least my dry weight is down to 42 now thanks to all the extra treatments.
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« Reply #9 on: June 05, 2010, 08:37:36 AM »

Down here in oz they will schedule extra sessions to remove fluid if they believe you need it. Just the other day they got a guy to come in the day after as he was still 2L over his dry weight when he got off his session. I guess some units are more flexible than others in this regard.

What I have been doing lately with regard to fluids is I have been drinking diuretic fluids - green tea and cranberry juice(not together!!) and they work quite well for me actually. We're coming into winter so a nice hot cup of green tea really does it for me AND I am peeing more out. I'm not going to make grandiose claims, but I can tell you that it has definitely made a difference.. and even better my labs are fine - Cranberry juice is low potassium, and green tea is no worse than regular tea in that regard, so my labs have stayed steady, which was a minor concern for me, but that's all good. End result I can drink maybe a cup or more more per day and still come in between 1.5 and 2.0 over between treatments, which is perfect for me.

I am not sure how that might affect you if the fluid is in the tissues, but it might help a little?
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« Reply #10 on: June 05, 2010, 02:41:39 PM »

Maybe im having a little difficulty explaining myself? There is no quick fix i found out today and it can take up to 18 months to get at that fluid thats stored in my tissues. It seems another ex PD patient has had exactly the same problems ! You CANT go in for extra sessions ..ok if it was an emergency , but no amount of extra sessions will pull this off in one or two goes , i would just crash ..crazy i know ! It seems it will filter out slowly so session by session i might pull off an extra 100ml or something but its going to take time !
RM ..you've just entered into winter? ...lmao we are having the hottest summer for years ! You are in OZ arent you?  Just to let you know you have KS 's little brother living there now ! and he loves it !
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« Reply #11 on: June 05, 2010, 09:29:11 PM »

That fluid retention can be a real (b word lol) can't it? My husband had it for a long time. Have they talked about increasing your lasix or other type water pill by chance? Just a thought. Also, heart consitions like Congestive Heart Failure (which i hope you don't have but justt hought I'd add) can cause a lot of fluid retention. healthy kidneys normally help regulate your body's fluid and blood pressure. Oh yeah, how's you BP been? I know you want a quick fix which is understanable but you also want to get to the bottom of this correctly. Just a little patience......When taking your fluids in don't forget to include soups and even certain fruits with a high water content.
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« Reply #12 on: June 06, 2010, 04:50:01 AM »

Thanks  texasstyle but ive been doing dialysis for 7 years now so pretty clued up on the fluid intake ..lol !  Water pills stopped working for me years ago ! Although i do still go ! I am actually due to go for a heart scan at the end of the month ...no rush eh ! typical of over here !
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« Reply #13 on: June 06, 2010, 06:20:06 AM »

ok, this may not be right for anyone else, but for us what happened was........ hubby was retaining water. WE had gone drastic NO salt and his body (like someones going on drastic diet) took to holding onto the little water thinking it may not get more. (i know, sounds weard)  He started exercising just before dialysis to get the fluids into the blood so it could be taken off, having a pinch of salt to trick the body into thinking it was getting salt now, and he started loosing the fluids.  I sorta figured that out and asked the tech and he agreed i was right.  He continued to loose it and is now very comfortable and dry weight.  You can still barly feel it on his shin bone but dr said that's the last to go in some.  Anyway, ask about the exercise thing just before since your already a no salt person, and see what yours has to say.  just a suggestion that worked for us  ;)

KS, of all of the responses, boswife's is the most intriguing. At our dialysis unit, if someone is crashing late in the session they are offered a cup of chicken broth - very salty! It always helps. My thought is that the salt draws the fluid trapped in tissues into the bloodstream thereby boosting blood pressure.

Boswife is suggesting a little salt predialysis, as a parallel, drawing fluid from your tissues into you bloodstream making it available to be dialyzed off. Perhaps with this you might be able to get at the extra fluid a couple of hundred mls at a time instead of the 100 mls. Good luck with this.

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« Reply #14 on: June 06, 2010, 01:59:29 PM »

Getting more protein will help keep the fluids from getting trapped in tissues. Also, before a dialysis session, you can exercise (especially the muscles around where the fluid is accumulating) to help move the water through the lymphatic system and into your circulatory system, where the dialysis can get at it. If you can find someone to do a good lymph massage before dialysis, that can help even more.
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3/2007Kidney failure diagnosed5/2010In-center hemodialysis
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« Reply #15 on: June 06, 2010, 03:06:41 PM »

Very interesting ..the salt one would be the first one to try as even before the whole kidney failure thing i have never used salt .(.only in foods that you buy that its already in ) but i never add it to anything or eat really salty food.

Would love the massage theory , but sadly any sort of a massage over here is expensive sadly or i would never be away !
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« Reply #16 on: June 06, 2010, 03:35:41 PM »

KS, of all of the responses, boswife's is the most intriguing. At our dialysis unit, if someone is crashing late in the session they are offered a cup of chicken broth - very salty! It always helps. My thought is that the salt draws the fluid trapped in tissues into the bloodstream thereby boosting blood pressure.

Boswife is suggesting a little salt predialysis, as a parallel, drawing fluid from your tissues into you bloodstream making it available to be dialyzed off. Perhaps with this you might be able to get at the extra fluid a couple of hundred mls at a time instead of the 100 mls. Good luck with this.
That is a good story but not only half true, and not a good idea IMHO. Salt in the blood indeed draws fluid from the tissues, but at the same time salt migrates from the blood into the tissues. That extra salt in the tissue makes it more difficult to get the fluid. Net result: no gain, actually some loss especially if you are trying to get to difficult fluid. Cheers... Sid

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« Reply #17 on: June 06, 2010, 03:46:14 PM »

Is most of your food prepared from scratch by you?  I ask this because any restaurant food or prepared foods, whether boxed or frozen, are pretty high in sodium which is often used to preserve them.  Crackers, biscuits, etc.  Even some drinks contain the sneaky sodium and when I was on D I often didn't feel like prepping my own stuff but eventually figured I'd have to.  For me personally, fluid retention was always related to sodium I wasn't even aware of...MSG etc.

I've never been on PD so don't know anything about the body holding more fluid as a result of that.  Hope you find an answer soon.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #18 on: June 06, 2010, 05:10:13 PM »

KickStart:

Just a thought:  Are you on a sodium profile (sodium modeling)?

The sodium profiles are murder, because they actually put sodium into the patient's body during the session (making the patient very thirsty), and then remove the sodium by the end of the session. But the thirst remains, and can cause the patient to drink lots of fluids when he gets home.

I never let them do a sodium profile on me.  I got my neph to ban it for my treatments.
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« Reply #19 on: June 07, 2010, 05:35:09 AM »

I have no problems with sodium in any shape or form , my bloods are ALWAYS way below average for it !
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« Reply #20 on: June 07, 2010, 01:38:21 PM »

KS, low sodium blood levels don't necessarily mean that you're taking in low sodium, my understanding is that it could in fact be an indication of fluid being held in the tissues...I found this to be interesting and also somewhat confusing.  Here's a link to "blood tests on line"  where they explain more about this...especially in the "What the test means" section.   I wonder if our member "nephron" could help with understanding what might be going on with your fluid.

http://www.labtestsonline.org/understanding/analytes/sodium/test.html
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #21 on: June 07, 2010, 02:37:11 PM »

Thanks ..interesting , but i dont suppose i will ever get an answer to why it happening ..i will just have to plod on , like everything to do with kidney failure ..nothing is straight forward is it !
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« Reply #22 on: June 07, 2010, 02:38:02 PM »

Maybe im having a little difficulty explaining myself? There is no quick fix i found out today and it can take up to 18 months to get at that fluid thats stored in my tissues. It seems another ex PD patient has had exactly the same problems ! You CANT go in for extra sessions ..ok if it was an emergency , but no amount of extra sessions will pull this off in one or two goes , i would just crash ..crazy i know ! It seems it will filter out slowly so session by session i might pull off an extra 100ml or something but its going to take time !

I was just saying, because I was having a very hard time getting any fluid off, at one point I was carrying around 20 extra pounds, I could barely walk five feet without getting winded and it compromised my breathing when I went to have my fistula done. I've been going in for extra fluid removal for the past two-three months. I didn't ask to go in, I was pretty much required to, I still am actually. Again, just saying, that's what worked/works for me.
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