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Author Topic: talking about weight ..  (Read 3048 times)
KICKSTART
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« on: August 19, 2009, 11:43:28 AM »

I need a bit of info please ! Between the time its taken for them to change me over from PD to hemo (and the fact PD wasnt working) Im really fluid overloaded, i mean in the breathless zone now (10kgs over) I have been told they cant pull it all off at once and can do about a litre=1 kilo per hour. The thing is they are only doing 3 hour sessions with me to start, till i adjust to it, so im not really getting much fluid off and no matter how much i limit my fluid intake , its back on by the next session , so my weight is only coming down by a very small amount each time. How long will it take at this rate to get all this fluid off? I was always within my target weight on PD and this is killing me !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
monrein
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« Reply #1 on: August 19, 2009, 12:34:45 PM »

KS, can you ask them about doing a "puff" (i think that's what it's called) session or even a couple, where they just pull fluid or even adding on some time to your three weekly sessions (not a welcome thought I know but the fluid feeling is pretty awful too) to draw more off?
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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
del
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« Reply #2 on: August 19, 2009, 04:09:29 PM »

When my husband had to change from PD to hemo he was very fluid overloaded too (about 25 lbs!!)  he even had difficulty seeing because the fluid was causing pressure on the blood vessels on the back of his eye. He was dialyized every day 3 hours for 2 weeks to get the fluid off!!  Please ask them to do some extra sessions with you to get the fluid off - they can just remove fluid during these treatments if they want - no cleaning .  The extra cleaning might not hurt though!!  Take care.
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twirl
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« Reply #3 on: August 19, 2009, 05:18:27 PM »

I had to go to the hospital with congestive heart failure because of too much fluid not being taken off - please talk to them
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BigSky
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« Reply #4 on: August 19, 2009, 05:18:48 PM »

If its easy for you to shift fluid you can ask them to pull more than one kilo an hour.  I would try for for 4-5 kilos and have them set the machine to remove more in the beginning of the treatment and less toward the end.
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #5 on: August 19, 2009, 05:47:00 PM »

My experience was that if they tried to take more than about 1.5 kilos I would get very sick - so be careful.  I'd ask to either do longer, or more often till it gets sorted.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
monrein
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« Reply #6 on: August 19, 2009, 06:12:36 PM »

I could never pull much more than a kilo an hour or I'd get a very bad headache.  It was also a guideline in our clinic although there was a bit of leeway possible if it wasn't a regular thing.  It may depend on how much fluid you hold in your tissues compared to others.
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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
KICKSTART
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« Reply #7 on: August 20, 2009, 06:32:29 AM »

Asked today pulling off more fluid yet isnt an option, they said i would probably crash and then they would have to give me loads of saline , which really defeats the object ???????
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Meinuk
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« Reply #8 on: August 20, 2009, 06:52:16 AM »

Kickstart, I was thinking about what you are going through when I posted this on the "Dry Weight Thread".  Is there any way that they can add extra sessions?  You need longer time for your body to adjust and get all that extra fluid off.  I'm sorry that you are having such a rough time, I hope that things are getting better.


http://ihatedialysis.com/forum/index.php?topic=15326.0

(I totally got off topic when I started writing this.  I have been thinking about what Kickstart has been going through lately)

But dry weight is just a guideline at best.  Techs and nurses don't always pay attention to the patient, they simply follow the doctors orders.  Sad but true.  That is why we need to educate ourselves - and why IHD is so important to me.  Proper Health Care should not be a battle, but it is and we are all in it together.

I put my foot down from day one about my dry weight, and we used my BP as an indicator.  (as I did not have any BP issues and was not on any BP meds).

Fluid & Toxins what a pain.  Unfortunately, our bodies are not set up for fluid removal in short intervals (yes, compared to 7 - 8 hour nocturnal, 3 hours is considered short).  Which is why 3x a week dialysis is at the bottom of the dialysis therapy list.

Dr. Agar in Australia has written some amazing stuff about why we can't get much fluid off in one dialysis run, and why we feel so terrible.

Here is a link to what he wrote on Home Dialysis Central

http://www.homedialysis.org/resources/tom/200711/

Bill Peckham has also written a lot explaining why longer, slower dialysis is better for moving fluid & toxins from the different parts of your body to your blood stream, and then out of your body for good (or until your next drink).

In short:

We store fluid in three parts of our bodies:  1)our cells, 2)our extracellular spaces and 3)our blood.
dialysis only removes the fluid from our blood.  There isn't enough time in 3 hours to move the fluid from the cells to the extracellular space and finally to the blood (the access point for dialysis).  This is why we cramp, and our blood pressure drops.

As people have suggested in other threads, adding extra days on the machine helps.  Don't try to take everything off at once, that will just make you crash by removing the fluid from your blood stream, and leaving you dehydrated, cramping, and your body trying to adjust - your cells and extracellular spaces will still be fluid overloaded.

Bill has written a lot about Dr. Agar's presentations:

http://www.billpeckham.com/from_the_sharp_end_of_the/2007/12/dr-agar-on-flui.html
(worth a read and there is a graph!)

Quote

    Dr. Agar on fluid and solute removal

    (hat tip Rich on HDC)

    Rich points to two articles (part 1; part 2) by Dr. Agar on Home Dialysis Central. I really enjoyed the articles in no small part because I agree so completely. It's always a joy to read something well written and authoritative that confirms your own belief.

    The critical concept is in Part 1, he in fact writes "Okay...focus here...it is crucial that you understand this next bit!

    "When HD removes a waste or fluid from your blood, it only reduces your blood level of that substance. When your blood level drops, a gradient (difference) forms between the blood and interstitium. This occurs because now the interstitium has more of the substance than your blood does.

    Your body wants fluid, salts, and wastes to be in balance between your three fluid compartments. Keeping this balance, called homeostasis, is the main job of the kidneys. To restore balance, dissolved substances (solutes) always move from a compartment with higher level to one with a lower level.

    So, as the blood level of a solute falls, this forms a gradient between your blood and interstitium. The solute will then move out of the interstitium and back into your blood. And this creates a second gradient between the interstitium and your cells. In this way, removing "X" from your blood will remove "X" from your interstitium, which, in turn, will remove "X" from your cells. Each of these steps takes time."

    This is the crucial concept. The way I imagine the situation is each molecule is a color - a pixel of color. Red, green and blue, red are the small easy to remove molecules potassium and phosphorus, green are the harder to remove molecules phosphorus and beta2, and blue are water and salts.

    At the start of dialysis all three compartments are white (the D65 point) because the colors are balanced between the compartments. If the red - small molecules come out fastest then there will be a color shift away from red to teal. I think you would see waves of color rippling through the body. As the blood reentered the blood stream from the venous needle it would be most teal and as it mixed in the blood compartment the blood stream would take on a blue/green tinge.

    [THE GRAPH IS HERE] This tinge would spread to the interstitum and finally to the cells. This kaleidescope would continue and based on Dr. Agar's explanation you'd see a shift towards purple in the blood compartment because the green molecules would be removed faster than they could be replaced from the interstitium.

    A high ultrafiltration rate would turn the blood compartment yellow as water is removed faster than it can be replaced. Another element that Dr. Agar did not discuss is that the blood does not circulate around the body evenly. My understanding is that at rest the blood tends to stay in one quarter of the body or another. I think if we could see the body as a whole we would see more rapid color shifts in the quarter of the body with the an extremity access (not sure of the impact of a catheter).

    Dr. Agar's article was in two parts - I think my response will be in three.
« Last Edit: August 20, 2009, 06:53:24 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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