I’m new to dialysis. I’ve been going for 3 months. The first 2 weeks were ruff, as my body got used to it. Them things started to go well.
These last two weeks have been bad again. I get hot, develop a really bad headache and muscle cramps. I talked to the doctor about it, and she told the nurse that I needed a different type of filter and not to “ Challenge me“. Meaning to take off more water than was needed to get me to my dry weight. (I still make a normal amount of urine)
So I went in on Monday, no new filter and they took off to much water again! I felt terrible. I had to walk around the parking lot for 20 minutes before I could drive home the cramps were so bad. I had cramps all night long, and I don’t feel good today.
Does anyone else go through this? What should I do? No one else in the center seems to have this problem.
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LavenderRabbit
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Oh my. So your nephrologist told the nurse to change your filter and she didn't do it? And apparently took off the same amount of water? Report this immediately to your nephrologist. When my husband (or other patients) had any cramping at his center, nurses were there instantly, immediately adjusting water extraction, massaging limbs, etc. If this situation doesn't change, I'd report the situation to the center's hotline, to Medicare, and to other organizations as needed to ensure instructions are followed. This behavior is completely unacceptable. You shouldn't have to find another dialysis center to get proper care but if you feel you must do so, you can check their ratings here: medicare.gov/dialysisfacili.... A dialysis patient is worth millions to a dialysis center.
It sounds like they’re definitely taking too much fluid off which is causing cramps etc. You will need to tell the nurse who’s putting you on not to take so much as it’s causing you to feel worse and giving you cramp. Do you know what they’re taking off? X
Well it definitely sounds like they’re taking too much off. Do you know what your urine output is a day? Our unit restrict fluids to 500mls plus output. You need to speak to your doctor/nurse to discuss how much should be taken off
I'm so sorry to hear that you're going through that. If your doctor gave the nurse these instructions and she's not following them, you may have to ask her to check again. You may have to be direct with your nurse yourself and firmly tell her not to take so much off. Maybe ask to speak to the nurse in charge of the clinic, and, as suggested, you may unfortunately have to call the hotline. I wish you the best of luck in rectifying this issue. Just remember that you have rights as a patient.
I’d definitely be pleasantly firm as you talk with the dialysis nurse. Remind her of the doctor’s directions PD dialysis an option? If so, and you’re willing to try it, you’d dialyze independently at home daily. That’s certainly what I’ll be doing first.
I DON'T think anyone's 'Trying To kill' you, quite the reverse in fact. What HAS 'Happened' is, almost certainly, a Communication Breakdown, let me explain.
The fact that you, like me when I was on Dialysis, are still 'weeing' does, to a large extent 'Negate' the need for a 'Dry Weight'. Put another way, you DON'T need much, if any, fluid removed during YOUR Dialysis. Secondly your 'Dry Weight' is necessarily, because you are so new to Dialysis, an 'Estimate' anyway- and, to me, it sounds rather 'low'. You, most Certainly SHOULDN'T be getting, these Cramps, after every Dialysis.
As regards the Type of 'Filter/ Column' used, the exact 'Dialysis Mixture', The Flow Rate, The Amount of Bi-Carbonate used, even the Amount of Anti-Coagulant needed by YOU are ALL Variables. These 'Things' both Do, and Will, need to be Adjusted as your Dialysis continues. Yes one Doctor/ Consultant might suggest a 'Change', whilst another may not.... this ISN'T, despite the appearance, Incompetence.... it is 'Trying To' REFINE the process for you Personally.
It seems to me that, from your Explanation, some Communication Lines have become Crossed.... Sometimes, with the best will in the world, this Happens.
You need to ask to Speak to, one of the Doctors, as soon as is Practical. Explain to Him /Her exactly the same as you have on here. 'Frame It' in terms of 'I don't think this is right, because.....' DON'T shout, make 'Rude' comments or, in any way Loose Your Rag... even if you feel like it! My 'bet' will be that ''They'' will be 'Round You, like Bees at a Honey Pot'... Not necessarily answering every 'whim' but certainly 'Listening' far more.
My experience, when I was on Dialysis, was this.... If you were Polite, Asked- rather than Demanded- and had Patience, when 'things' were busy, the Staff were 'Lovely, Helpful People'. If you Shouted, Screamed, Demanded, and generally made a Nuisance, of yourself- there were a Few like that- then the Staff did Only Their Job, NOTHING more. (One day, when I was on Dialysis, there were a Number of Blinds 'missing'- as a result I was Sweltering, on the Dialysis bed. I, on that occasion, did Complain.... by my next Session the Blinds had been replaced.)
I would, on you next session, simply ask if Less- or no- fluid can be Removed. If this is Referred to a Doctor, all the Better. Above all be Polite it IS appreciated.
Firstly you check your own weight and "INFORM THEM" of how much weight you want removed. Has your dietitian given you your specific dietary restrictions on potassium, sodium, phosphorus, fluid? If not, ask about it. In-center is typical for trying to remove too much fluid, too fast, in too-short amount of time. That is the outcome of trying to replace 168 hours of kidney function per week down to just 12. You *must* be your own advocate. Stand up for yourself, speak out, give expectations, then be sure to enforce them. Please remove only 1.5 Kilos today -- then ask them to show you where the amount is on the screen the fluid removal so you can keep an eye on that. Pickle juice, broth should help with the cramps. All your symptoms are notoriously famous for someone who has been challenged below target weight. Keep on them about the new filter. Finding the sweet spot of dry weight is more an art than science, and it is always a moving target. Be patient and respectful when speaking about it and you will discover they are on your side. Take a look at kidneyschool.org
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I am finding life difficult at the moment
what does kidney pain feel like?
Bad test results, don't know if I can do this
Trying To Stay Positive-
