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Author Topic: Wrything in agony  (Read 1214 times)
jambo101
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« on: March 08, 2019, 11:04:19 AM »

3 hours into my dialysis session today i got cramps in my arms, it was painful and there was nothing that could be done except turn off water extraction.it was a rough session as early on i went hypoglycemic then later on very low Blood Pressure. on the positive side they detached me from the machine 15 minutes early. .The title of this forum is an understatement.
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Jim
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« Reply #1 on: March 08, 2019, 02:25:08 PM »

Maybe next time they'd allow you to have a couple sips of tonic water (the kind with quinine in it). Bring your own bottle and ask them. Tonic water works super fast and you only need small sips of it. My husband sometimes would cramp up when we did home hemo and I not only reduced or stopped fluid removal but he was allowed a small sip of tonic water. I'm not on dialysis but have a history of muscle cramps and when I get those terrible ones that go all the way up the thigh I start swallowing a little tonic water. That stuff is a lifesaver. But of course your neph would need to approve. I don't see why they wouldn't unless you are extremely fluid overloaded. Please ask because there is no need for you to be suffering like that. They should help you out a little more with this...my husband's clinic gives tonic water to those who can have it.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
GA_DAWG
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« Reply #2 on: March 08, 2019, 08:25:44 PM »

Hope things are better for you jambo. I know the nights after a session like you describe are often pretty rough.
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Charlie B53
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« Reply #3 on: March 12, 2019, 05:00:05 AM »


I'm surprised to hear of arms cramping.  Mine are always my calves.

But last week while in the chair I started cramping in my mid-ribs in the sides.  I thought it was because of the way I had turned to look and reach for something that had fallen off my chairside table.

I'vve never figured out why but I sometimes cramp in my hands and fingers.  Many times while driving but not always, sometimes just reaching for a glass, or a door knob.   

I think I'm weird.
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GA_DAWG
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« Reply #4 on: March 12, 2019, 09:34:56 AM »

Nope Charlie, perfectly normal. My hands and feet usually lead the way to cramps. If I don't pay attention to those, the calves are next. One of the worst is the one that wraps around the chest, I suppose its the diaphragm? It seems I am at a point where just one or two tenths below dry weight causes cramps these days.
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jambo101
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« Reply #5 on: March 12, 2019, 03:27:59 PM »

 My physical maladies almost always happen in that 4th hour ,cramps usually starting in the hands light headedness verging on passing out .
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Jim
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Going through life tied to a chair!

« Reply #6 on: March 12, 2019, 04:55:19 PM »

I take a gulp of Tonic Water before I leave for dialysis.  Quinine is a natural muscle relaxer.  That why it works.

I also like Gin and Tonic's.   It is good for me!!   
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jambo101
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« Reply #7 on: April 02, 2019, 07:49:22 AM »

 Im really coming to hate this whole dialysis process, i think major depression is setting in. :(
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Jim
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« Reply #8 on: April 02, 2019, 09:37:04 AM »

jambo, don't get depressed. I had a lot of these problems starting out, especially the light headedness and passing out. I finally figured out that if I started getting light headed and especially if I suddenly got hot and broke inot a sweat, I needed to get soemone's attention quickly to have some fluid returned. I kept being told that it was a matter of figuring out how fast they could remove fluid, getting a true dry weight, and that it would get easier after I got rid of the catheter. All o fthat proved to be true. Still no day at the beach, but easier than the beginning.
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Michael Murphy
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« Reply #9 on: April 02, 2019, 06:34:11 PM »

I agree the closer you are to the start of Dialysys the more it sucks.  After 6 years it still sucks but it sucks less.  When I started I found the never ending string of Dialysys days depressing.  One Friday when I was on my second or third month oh Dialysys on a Friday I turned to the charge nurse and after dialysis I told her that was it I wasn’t coming back anymore this week.  She started to argue and I just repeated nope this is it for the week.  After several iterations she suddenly put together it was Friday I was a MWF patient and I was done for the week. So she slapped me in the back of the head and walked away laughing.  Strangely I felt better when I left and the next week I realized for me Dialysys needed to be dealt on a week by week basis and every Friday I would celebrate being done.  I also started collecting dialysis shirts to vent with.
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kitkatz
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« Reply #10 on: April 02, 2019, 08:18:46 PM »

I like the idea of t shirts to vent.  I may steal the idea.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

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

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Michael Murphy
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« Reply #11 on: April 02, 2019, 08:42:56 PM »

Feel free my favorites are first I found “Dialysis: Doomed if you do, Dead if you don’t “ and the second is a large shark swimming with its toothy mouth open with bold print “Dialysis Bites” some how they make me feel better.
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GA_DAWG
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« Reply #12 on: April 04, 2019, 09:20:22 AM »

Michael,, what you said about the nurse slapping you on the back of the head and laughing with you made me think of something. It is far easier if, as a patient, you are able to forge a connection with the nurses and techs. Thankfully, at our clinic that is not hard as we do not have the "I know what's best" types. If you know you can trust the people who are going to be treating you for four hours, and know they are going to do their best to make you comfertable, except the temperature, and make sure you have a good treatment, it is far easier to face going in three times a week. I can't imagine the agony of some who talk about how they are ignored and not listened to regarding their treatments, and the way some say the nurses or techs make it a point to tell them they do not care.
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coldhoist
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« Reply #13 on: July 07, 2019, 12:37:53 PM »

I have sciatica and I am ALWAYS in pain in the chair. I get leg spasms with my legs jumping around involuntarily. It is torture for four hours. But, as soon as I get out of the chair and stand up, I am fine.
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lulu836
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« Reply #14 on: July 07, 2019, 08:03:03 PM »

Michael,, what you said about the nurse slapping you on the back of the head and laughing with you made me think of something. It is far easier if, as a patient, you are able to forge a connection with the nurses and techs. Thankfully, at our clinic that is not hard as we do not have the "I know what's best" types. If you know you can trust the people who are going to be treating you for four hours, and know they are going to do their best to make you comfertable, except the temperature, and make sure you have a good treatment, it is far easier to face going in three times a week. I can't imagine the agony of some who talk about how they are ignored and not listened to regarding their treatments, and the way some say the nurses or techs make it a point to tell them they do not care.

Very well said!!
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Of all the things I've lost, I miss my kidneys the most.
jambo101
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« Reply #15 on: July 11, 2019, 04:09:22 AM »

I have sciatica and I am ALWAYS in pain in the chair. I get leg spasms with my legs jumping around involuntarily. It is torture for four hours. But, as soon as I get out of the chair and stand up, I am fine.
i am in a similar position, pain and discomfort 3X a week coupled with nausiating taxi rides to and from the hospital coupled with an inability to walk more than 50ft without having to sit down gasping for breath, im wondering if this is my lot for the rest of my life whats my motivation to continue with this life?
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Jim
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« Reply #16 on: July 11, 2019, 08:45:28 AM »

If you are gasping for air so easily, you should check out your heart and lungs.  It is sometimes tricky to determine if breathlessless comes from "here" or "there."  I have been unable to breathe because I'm asthmatic and that sometimes kicks up.  Other  times itI a's because I didn't dialyze enough and I have fluid on board.  Finally, I have a bad heart that shows up as shortness of breath.

I agree that it is sometimes hard to decide if life is worth living when you feel crummy all the time.  The choice is yours.
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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
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