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Author Topic: How Do You Feel During Dialysis?  (Read 1816 times)
coldhoist
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« on: July 30, 2018, 03:54:40 PM »

I have gotten to the point that I am so uncomfortable in  the chair I feel like screaming. I am not in any pain, but just feel horrible. My legs will sometimes have spasms, not cramps, but spasms. It feels like pure torture. Today was the first time I cramped up, in both legs. By the time I left  dialysis , I was completely exhausted and drained. I am dreading doing dialysis now.
Does anybody else go thought anything like this?
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rcjordan
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« Reply #1 on: July 30, 2018, 04:34:21 PM »

Yeah, it's called 'restless leg syndrome' and is listed as a common problem with dialysis.  I was prone to it and cramps for years prior to kidney failure, but it had subsided. Both came back some in the chair, mostly restless leg. Doc just raised my potassium in HHD dialysate to see if that helps.   I had also raided my black coffee intake to increase potassium and it seemed some better.

Try finding a pressure point on the back of your thighs and putting a pillow, rolled up towel, or even a book under there. Helps ...sometimes.
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
lulu836
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« Reply #2 on: July 30, 2018, 06:35:44 PM »

I feel fine after and during dialysis as long as I have kept my fluid intake low and my food intake according to the renal diet guidelines.  I never exceed my dry weight by more than 1 so my  machine is set up for 1.5 removal.  I pass the time by surfing the net, answering email and doing crossword puzzles.  Theres no point fighting against dialysis.  It has to be done.
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Of all the things I've lost, I miss my kidneys the most.
cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: July 31, 2018, 01:04:10 AM »

How much fluid are they trying to take of? Sounds like getting too dry, or having to remove fluid too fast too quickly.


Good luck, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
kristina
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« Reply #4 on: July 31, 2018, 04:24:02 AM »

I feel fine after and during dialysis as long as I have kept my fluid intake low and my food intake according to the renal diet guidelines.  I never exceed my dry weight by more than 1 so my  machine is set up for 1.5 removal.  I pass the time by surfing the net, answering email and doing crossword puzzles.  Theres no point fighting against dialysis.  It has to be done.

Many thanks lulu for saying exactly what I thought ... I also have 1.5 fluid taken off and I also make always sure never to exceed my dry weight ...  and the first two hours of dialysis I always read in an interesting book or do some crosswords and the last two hours I watch an interesting youtube-film and I have now started to renew my "old" languages again. I grew up with 5 different languages and was quite fluent at all of them, but in recent years I have not had a chance to make any use of them anymore, but by watching interesting films on youtube in those different languages, it gives me a chance to get my "old" languages back again in my own time and is also an interesting and entertaining "grey-cell-exercise" ...
Best wishes from Kristina. :grouphug;
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rcjordan
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« Reply #5 on: July 31, 2018, 06:53:24 AM »

>Sounds like getting too dry, or having to remove fluid too fast too quickly.

Not for me, my pull was usually .7 and I was on-target for weight.
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
cassandra
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« Reply #6 on: July 31, 2018, 10:47:39 AM »

>Sounds like getting too dry, or having to remove fluid too fast too quickly.

Not for me, my pull was usually .7 and I was on-target for weight.


Okay, if your bp is okay, and your dry weight suits you, and UF etc., than I would check what your bicarb is.


   :angel;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
GA_DAWG
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« Reply #7 on: July 31, 2018, 12:37:59 PM »

Some, well okay most, of the chairs are nearly worn out and if you do not move around a little, they will cause cramps, especially if you sit straight legged with your thighs pressed to the edge of the seat all the time. I forget who it was above who said it is what it is and there is no need to fight against dialyssis, but they are correct. I try to take a nap for most of the first two hours, then listen to music, read and play games the second half to keep my mind occupied.
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coldhoist
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« Reply #8 on: August 01, 2018, 05:42:56 AM »

Some, well okay most, of the chairs are nearly worn out and if you do not move around a little, they will cause cramps, especially if you sit straight legged with your thighs pressed to the edge of the seat all the time. I forget who it was above who said it is what it is and there is no need to fight against dialyssis, but they are correct. I try to take a nap for most of the first two hours, then listen to music, read and play games the second half to keep my mind occupied.

The social worker told me the exact same thing about the chairs. I am so uncomfortable, I cannot sleep, I cannot concentrate enough to focus on working my crossword puzzles. I try moving around in the chair but it does do much. What I would really like to do is stand up, but they will not let me.
A few days ago, when I cramped in both legs, they we taking off 3.5. When I was cramping another nurse came over and said they were taking off too much. When I go in today I am going to tell the nurse to limit the pull of to 2.0. Hopefully, that will help a bit.
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lulu836
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« Reply #9 on: August 01, 2018, 06:06:23 AM »

@coldhoist  Do you not have recliners?
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Of all the things I've lost, I miss my kidneys the most.
GA_DAWG
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« Reply #10 on: August 02, 2018, 10:12:04 AM »

We have recliners but the padding is really worn out. the only thing that seems to be the same as original is the stength of the spings as they stick into your backside.  After a while, you will find your limit for how much you can tolerate them taking off. After that, it is up to you to keep your fluid intake below that amount.
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jambo101
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« Reply #11 on: August 09, 2018, 03:42:55 AM »

When i getleg  cramps at home the only solution is to stand up for a few minutes, how does this work when you are hooked up in a dialysis chair? are you expected to just wryth in agony for who knows how long?.
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kickingandscreaming
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« Reply #12 on: August 09, 2018, 04:35:00 AM »

You will writhe, but you'll also be given saline to "right" the condition.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
GA_DAWG
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« Reply #13 on: August 09, 2018, 09:44:48 AM »

One thing to remember is if you sudedenly feel light headed or break into a sweat, get someone's attention quickly. That is often a sign they have pulled too much fluid off and the next thing will be passing out. I had one nurse who would ask if you were cramping. Even if you said just a little in my hands or feet, she would tell you wrong answer and put back fluid.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #14 on: August 09, 2018, 11:35:39 AM »

I had one nurse who would ask if you were cramping. Even if you said just a little in my hands or feet, she would tell you wrong answer and put back fluid.

Pretty bad policy, I always get cramps, if I had her as a nurse I'd never dialyse.

Lots of people get cramps long before their dry weight. Used to have an elderly gentleman on the chair next to me who always drank too much and got cramps during dialysis. If they stopped every time he got cramps he'd be about two thousand pounds by now (or dead).

One thing to remember is if you sudedenly (sic) feel light headed or break into a sweat, get someone's attention quickly. That is often a sign they have pulled too much fluid off

That is usually a sign of your blood pressure dropping too low. Often a problem with the speed of draw (UF rate) rather than the quantity. It can be caused by too much drawn, but never assume that as the only possible cause.




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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
GA_DAWG
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« Reply #15 on: August 09, 2018, 01:10:10 PM »

Right Paul. The thing to remember though is it is often a sign you are about to go under.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #16 on: August 11, 2018, 10:26:20 PM »

The thing to remember though is it is often a sign you are about to go under.

Been there, done that, bought the tee shirt.

Possibly the most terrifying moment of my life is calling a nurse because I was doing the "feeling ill, sweating, etc." thing, passing out, then waking up to see the entire clinic's staff except the cleaner, gathered around my bed frantically doing stuff, and one of them leaning over me yelling "Come back to us Paul, come back to us." I thought I was dying.

Although I have now done that enough times to simply think "Oh s*** here we go again" when it happens.

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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Michael Murphy
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« Reply #17 on: August 12, 2018, 04:05:50 AM »

I just learned or basically relearned the lesson when you have thought you have seen it all dialysis introduces a new terror.  As usual it was very cold in the clinic so I decided to pull my blue fuzzy blanket up higher.  What I did not realize was the tech that inserted the needles had taped the return needle to the blanket when he taped it down so I pulled the blanket up.  I was the comfortably sitting under my blue fuzzy blanket and going back to my nap with my eyes closed.  Suddenly I felt what I thought was water droplets landing on my face.  The return needle had been pulled out and was spraying blood all over the place.  It was like a cartoon of a fire hose.  Luckily it was taped to the blanket with about 6 inches of tape.  The entire area looked like there had been a axe murder.  I quite reasonably thought this was a emergency and the thought they ran through my mind was to yell fire cause no one would know what I needed if I yelled blood.  I thought again and yelled HELP!.  I became the center of 2 nurses, 3 techs all trying to bring order out of the chaos.  They stopped the pump reinserted the needle, and began the massive clean up effort.  Me, the chair,the curtain to my left (luckily the patient to the left was colder than I and had the curtain pulled out to the aisle and was not splashed by the blood that covered the curtain), my blanket( I told them to throw it out it was so bloody), my chair, the machine, and finally the floor.  I was so embarrassed I brought 3 dozen assorted Dunkiní Donuts to the next treatment.  Since that day everyone uses extra tape on my needles and I am now waiting for the next dialysis terror arrack. I am trying to nap with one eye open.
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jambo101
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« Reply #18 on: August 12, 2018, 10:48:16 AM »

Im surprised you need to yell for assistance if something goes wrong, couldnt they just install a panic button at each station?
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #19 on: August 12, 2018, 12:02:10 PM »

couldnt they just install a panic button at each station?

We have two buttons. One is for minor things (EG "can I have another blanket"), the other for major things (EG "Excuse me, I hate to be a pain, but I think I'm dying.").
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
KatieV
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« Reply #20 on: August 12, 2018, 07:47:33 PM »


Been there, done that, bought the tee shirt.

Possibly the most terrifying moment of my life is calling a nurse because I was doing the "feeling ill, sweating, etc." thing, passing out, then waking up to see the entire clinic's staff except the cleaner, gathered around my bed frantically doing stuff, and one of them leaning over me yelling "Come back to us Paul, come back to us." I thought I was dying.

Although I have now done that enough times to simply think "Oh s*** here we go again" when it happens.

This happened to me, except it was during plasmaphersis.  Nurse went to get more benadryl after I started getting itchy.  Next thing I remember is a crowd of people around me after they called a Code Blue!
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Michael Murphy
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« Reply #21 on: August 12, 2018, 09:26:08 PM »

The clinic I use in the Adirondacks has panic buttons.  The one time I needed it I was infiltrated so badly that my arm was blowing like a ballon.  As I watched my arm inflate I screamed the techs name very loudly.  I felt I did not have the time to kocate the button so I screamed until someone turned off the pump and reset the needle.  The bad part was the tech was upset my attitude is that I am on dialysis and these things happen.  Since then I have been treated by her many times and have not had a problem since.  Actually I look forward to having her treat me since she is much faster then the nurses in my home clinic. Since my heart attack most of the times I am treated by one of the nurses in my home clinic, I think itís because they are afraid I am going to die,  so itís a pleasure to have a tech take care of me.
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GA_DAWG
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« Reply #22 on: August 14, 2018, 09:28:54 AM »

Me too Michael. I would much rather have a tech, who sticks all the time, to a nurse who only sticks occassionally.
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kitkatz
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« Reply #23 on: August 19, 2018, 02:45:44 PM »

I pulled a needle out one night at nocturnal dialysis.  Good grief.  I had to call my daughter to bring me new blankets and clothes.
THe nurse had had that only happen twice in his career.  He taped me down like a mummy after this experience.
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

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10 years on and off dialysis

« Reply #24 on: August 20, 2018, 10:55:49 AM »

Sometimes I have a happy session of dialysis, where I nap, read the newspaper and do puzzles, read a book etc and suddenly there's only 5 minutes to go
but
I also get sessions from hell when everything hurts, my joints protest, and I cannot concentrate on anything except the silent scream within. I have a fistula just above my right ankle, so I cannot move my legs much at all, my knee is the worst. I try taking a strong painkiller, having a cup of ice, eat something with sugar in it and if necessary I cut my session short. I have been on dialysis 12 years plus and sometimes the futility of it all makes me very depressed.
Things like not feeling well post dialysis, serious joint problems affecting my mobility, low hb problems and indifferent nursing staff...
So I hear you brother.
I think the first 6 months is the worse. Though it's never a piece of cake.
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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