Coping With The Top Five Side Effects of Dialysis

[Marina]

Coping With The Top Five Side Effects of Dialysis

Thousands of dialysis patients experience side effects of treatment. Here's the National Kidney Foundation's list of the five most common side effects, along with advice on how to deal with them so that you can benefit from your dialysis treatment and avoid some of the discomfort.

Low blood pressure is the most common side effect of dialysis, affecting one out of four patients at some point over the course of dialysis treatments. The two primary causes are gaining excess fluid weight between sessions and having a weak heart. In order to avoid excess fluid weight gain you should maintain a healthy fluid level by drinking no more than a quart of liquid in excess of what is discharged from the body daily and avoid salty foods which increase thirst. If you did gain excess fluid weight, discuss the issue with your dialysis team who can adjust the dialyzing time accordingly.


Nausea and vomiting are associated with kidney disease in general but low blood pressure and excess fluid weight gain are also common causes. If experienced during a dialysis treatment, inform the nurse who can adjust the machine accordingly. If you're suffering from nausea at home, speak to your doctor about a prescription for anti-nausea medicine.

Dry or itchy skin is experienced by many patients undergoing dialysis, especially in the winter. Use soaps which don't dry out skin as much, such as Ivory soap, and plain moisturizing lotions, such as Vaseline or Eucerine. Take care to avoid fragrance lotions which may sensitize the skin further. In some cases, itchy skin can escalate into eczema, a white, scaly, itchy thickening of the skin, which should be discussed with your doctor who can prescribe a topical medicine.

Restless leg syndrome is another common side effect that causes patients to keep moving their legs as a result of the leg nerves and muscles creating a crawly or prickly sensation. Restless leg syndrome can be tied to some forms of kidney disease, diabetes, hardening of the arteries, or a vitamin B deficiency, so it's important to speak to your doctor for a diagnosis and a prescription which will address the specific cause.

Muscle cramping causes extreme discomfort to many patients. Since the cause of this side effect is unknown, the issue can only be addressed symptomatically. Doctors advise either stretching the cramping muscle to release the pain or applying hot packs to the affected area in order to increase circulation. Some medications may help but these should be discussed with your physician.

[Meinuk]

I was waiting to see if someone would post this.

  
I see it as one step forward and three steps back.  Finally, the NKF is talking about dialysis, but sadly, they are blaming YOU for low blood pressure.

Low blood pressure is the most common side effect of dialysis, affecting one out of four patients at some point over the course of dialysis treatments. The two primary causes are gaining excess fluid weight between sessions and having a weak heart. In order to avoid excess fluid weight gain you should maintain a healthy fluid level by drinking no more than a quart of liquid in excess of what is discharged from the body daily and avoid salty foods which increase thirst. If you did gain excess fluid weight, discuss the issue with your dialysis team who can adjust the dialyzing time accordingly.

It seems to always be the patient's fault when they are fluid overloaded.  The NKF would never write anything about the proper management of dry weight, or training staff properly in fluid dynamics.  It is simply easy to say "you need to avoid gaining excess weight" 

Hmmm. I guess that no facilities use sodium profiling either. 

I am all for patient education.  But how about a little respect? I get it that there is a huge non compliant population out there, but there are also many, many people who are being shut down, saying "you are just doing this wrong".  It is the attitude that kills me. And if you truly want patient centered care, you have to include the patient in the care.  Don't blame them, make them be involved in the treatment.  Encourage discourse.  Encourage involvement.  I may seem like a nit-picker, but words matter.  The only way that we can change the current culture is to stop dictating to and start involving people.

This is how I would have re-written Low Blood Pressure:

Low blood pressure is the most common side effect of dialysis, affecting one out of four patients at some point over the course of dialysis treatments. Two primary causes of low blood pressure after dialysis are removal of excess fluid during treatment and having a weak heart.  If you are coming to dialysis over your dry weight, speak with your healthcare team about either adjusting your time and treatment, adjusting your fluid intake between treatments or adjusting your dry weight as needed. It is important to avoid excess fluid weight gain between treatments, remember to maintain a healthy fluid level by drinking no more than a quart of liquid in excess of what is discharged from the body daily and avoid salty foods which increase thirst. 

Seriously people, is it THAT difficult to show a little respect? And I am not even going to launch into the discussion of "having a weak heart" there isn't enough time in the day.

[Joe]

Oh goody, I'm 5/5 

[Willis]

Oh goody, I'm 5/5 

Ditto. 

Exercise does help with the cramps though. But right now I've got the "itchies" so bad I carry around a back-scratcher. 

Maybe it's #6 but I'd like to add insomnia to the list.

 

[Riki]

I only have one, and that's low blood pressure. It was never caused by me having too much excess fluid, it was caused by too much fluid being taken off.

And the thing about the cause of muscle cramping being unknown.  It's not unknown.  It's another thing caused by too much fluid taken off. The only time I had cramping while on dialysis was when the nurse put my goal at 3.8 kgs when it was supposed to be 2.8 kgs.  By the time I started cramping, they'd taken off 3.2 kgs, and my limit is 3kgs.

[Lovebelle]

The only time I experience Low Blood Pressure was when I was on HD and they were way too aggressive with pulling off fluid. I dont gain alot of fluid between treatments, there is no reason to try to suck me dry. Which leads to another symptom I blame on aggressive treatment, muscle cramping. Cramping in that chair was literally my personal hell. Id break out into that sweat, and try to not scream out all the profane things that would come to my mind. Painful..yikes...I dont even want to think about it.

With PD, I experience a bit of everything else especially the insanely dry skin. I go through so much lotion, I need to buy stock in it.

[Marina]

I was waiting to see if someone would post this.

  
I see it as one step forward and three steps back.  Finally, the NKF is talking about dialysis, but sadly, they are blaming YOU for low blood pressure.


Seriously people, is it THAT difficult to show a little respect? And I am not even going to launch into the discussion of "having a weak heart" there isn't enough time in the day.

I  don't  want  to  take  their  side,  but  fluid  overload  is   9 times  out  of   10  the  patients  fault.
We  are  told  early  on  to  restrict  fluid and sodium  intake  to  avoid  fluid   overload.
We sometimes  take  things/advice  lightly  without  giving it  much  thought  to  what  it  can  do  to  our hearts.

Yes  fluid  overload  and   excessive  fluid  removal  does  weaken  the  heart  and/or  blood  vessels.   

[Meinuk]

I was waiting to see if someone would post this.

  
I see it as one step forward and three steps back.  Finally, the NKF is talking about dialysis, but sadly, they are blaming YOU for low blood pressure.


Seriously people, is it THAT difficult to show a little respect? And I am not even going to launch into the discussion of "having a weak heart" there isn't enough time in the day.

I  don't  want  to  take  their  side,  but  fluid  overload  is   9 times  out  of   10  the  patients  fault.
We  are  told  early  on  to  restrict  fluid and sodium  intake  to  avoid  fluid   overload.
We sometimes  take  things/advice  lightly  without  giving it  much  thought  to  what  it  can  do  to  our hearts.

Yes  fluid  overload  and   excessive  fluid  removal  does  weaken  the  heart  and/or  blood  vessels.   

sheesh Marina, if you are going to quote me, use the whole quote.

Did you read what I wrote?  Or were you just being defensive for the NKF and trying to put me in my place by saying 9 out of 10... blah blah blah.

THAT IS THE PROBLEM.  We are not 9 out of 10.  simply dismissing us as "the majority" is not medical care.  It is not teaching the patient to think nor be a part of their therapy.  It is NOT forcing staff to look at each patient individually, and it is making every person that has suffered at the hands of an overly aggressive tech or nurse think that it was their fault.

It "9 out of 10" are doing something wrong then the education is wrong or sorely lacking.  (BTW, I would love to see your source for this 9 out of 10 statistic - was it a technician or a dentist? - hah, I am dating myself...).  Is it from the State Surveys?  Is it from a published peer reviewed paper?  Is it from the Dialysis Facility Reports?  or is it from the mouth of "someone who knows".

I am so sick of the disrespect that is given to people on dialysis that when I read comments like yours my blood boils even more.  This is not proper medical care.  This is treating a whole society of people like cattle.

Read the rewrite that I did of the NKF's paragraph.  Did I not make my point? I don't know any other way of pointing out the total disregard for patient involved care in that original paragraph.

But if you are happy with that, and don't care about the people who have been victim to assembly line dialysis, then I guess my words are wasted. Let's go ahead and keep treating people like they are cattle. well, 9 out of 10 of them at least...

Marina, the venom in this post is not directed at you personally.  It is because you are drinking the kool aid, and I want you to snap out of it. Think of it as tough love.  If we don't start training people to learn an advocate for themselves and their care, the industry will simply keep cutting corners and being more factory like.  sending out a tip that states that you have low blood pressure because either you have a weak heart or are drinking too much fluid is simply telling the patient that everything is their fault.

[Lovebelle]

I understand what Meinuk is trying to say and I tend to agree. NKF's statement is inaccurate and completely dismisses the fact that the excess removal of fluid during Dialysis is one of the main reasons for Hypotension. Instead their statement puts the blame on the patient by stating its due to excess fluid gain and a "weak heart". Their statement is both incomplete and inaccurate. I dont know if that was their intention but either way, they need to rewrite it.

I also tend to disagree with their assessment of muscle cramping. True there are many causes of muscle cramping, so its hard to pinpoint one reason, but some of the main reasons in a dialysis patient (in my assessment) leads back to fluid/electrolyte balance from the actual dialysis treatment. So to say there is no known cause is silly, since from my observations and experience, its a common occurance and staff typically know how to treat it at the time (i.e. adding fluid, giving sodium, etc).

[pagandialysis]

This is why I mostly ignore them and go with what I know works while keeping in mind things like phosphorous will kill me. Use your own common sense. Take at my dietitian, she lies to me all the time. Do I call her on it? No, I just let her go on with her scare tactics.

[Whamo]

I'm writing down every ounce of fluid I take in these days.  Going into dialysis, heavy, is no fun, as they take off more, strain the body more, and it causes cramps when they take off too much.  I've kind of overcome the problem over the last two weeks, but another problem has popped up.  My new fistula, in my upper left arm, hurts after a couple of hours on the machine.  It's a level three or four pain.  They gave me the pain killer before I start dialysis, but it wears off.  I've only used the fistula three times.  I'm wondering whether it will go away, get worse, or what to do about it.

[Riki]

If you've only used the fistula 3 times, it might be that it's getting tired.  It's still new, and it's still getting used to the stresses that the needles cause.  What you may need to do, if when the pain gets really bad, is to have the needle taken out and change back to your line for the rest of the run.  Your fistula is still maturing. It may need some extra time.  Mine wasn't like that, but I think I was just lucky.  The nurses warned me that it might happen, but it didn't.  Others around me did have that issue, though.

[Stu]

sheesh Marina, if you are going to quote me, use the whole quote.

Did you read what I wrote?  Or were you just being defensive for the NKF and trying to put me in my place by saying 9 out of 10... blah blah blah.

THAT IS THE PROBLEM.  We are not 9 out of 10.  simply dismissing us as "the majority" is not medical care.  It is not teaching the patient to think nor be a part of their therapy.  It is NOT forcing staff to look at each patient individually, and it is making every person that has suffered at the hands of an overly aggressive tech or nurse think that it was their fault.

I'm kinda with Marina on this one, when I was on haemo, when I came in with fluid overload, 100% of the time it was my fault. In reality it is pretty simple, if you don't drink it, you don't have to suck it off on dialysis. And I was a pretty non-compliant patient.

I can't see any circumstances in which it becomes the dialysis technicians fault that I feel like shit because I came into dialysis with 4 litres of fluid on which needed to be sucked off.

[pagandialysis]

...I can't see any circumstances in which it becomes the dialysis technicians fault that I feel like shit because I came into dialysis with 4 litres of fluid on which needed to be sucked off.

This is why i don't blame them; I just do it and suffer in silence.

[Stu]

...I can't see any circumstances in which it becomes the dialysis technicians fault that I feel like shit because I came into dialysis with 4 litres of fluid on which needed to be sucked off.

This is why i don't blame them; I just do it and suffer in silence.

Yeah, and dontcha just suffer! 

[pagandialysis]

I do pretty well. My dry weight is 125 and I sometimes come in at 130. Though I usually come in at 128.5.

[Meinuk]

You know, after reading some of these repiles, I tend to think, why bother.  The system is great as it stands.  People are non compliant and just sit and suffer, because they know that they are wrong.

That's great for everyone. We can read in the dialysis facility reports how great everyone is doing on dialysis.  Just because we have the highest death rate in the world, just means that our patients don't care about taking care of themselves and the proper attitude is to tell them that it is their fault that they are being dialyzed so violently.  If they had kept their blood pressure under control or hadn't gotten so fat and diabetic, well, we wouldn't need dialysis at all.  Shame on all of us.  The NKF is spending so much time and energy to tell 9 out of 10 of us that we are wrong. We need to be more grateful that they are trying to save us from ourselves.

Our peers are saying that we should just suck it up.  If the nine people who were infected with hepatitis C in my facility had taken better care of themselves, they never would have gotten infected it had nothing to do with the technician, nurses and Davita Management.  Dialysis in America is just great. You should be happy to be alive.

I'll leave you all with this.  If there are 10 students taking a math test, and 9 students fail, that means that there are nine stupid students, right?  It could never be a bad teacher.

Sigh.

[Riki]

I agree with you, Meinuk.  I saw issues with that first post as well.

I know that I'm not the most compliant patient either, but I do my best.  There are days when I know I've overdone things, and it's my fault, but there are also days when I've done everything I was supposed to and still feel like crap.  Is that my fault too?

Was it my fault when I cramped (and it was the only time I ever did) when the nurse that put me on set my goal at 3.8kgs instead of 2.8kgs and nobody caught it?

Was it my fault when my PD catheter extension came off just after the nurse had finished changing it, and instead of following procedure and starting over with a new extension tubing, she just retightened the one that came off, and I developed a peritonitis infection that nearly killed me?

I don't think so.  It's not always the patient's fault, even when they try to pin it on us

[fearless]

Meinuk, I sympathize.  I've noted this attitude in most of the patient education materials that I've seen in all realms of medical care.  It may just be reflective of many people's outlook on life, and you and I are in a minority.  Perhaps people prefer to believe that they are at fault because then they don't have to think about how little the medical "outside world" (that has so much control over the life of a kidney patient) respects their autonomy.  And they can believe they have more control than they do, so they don't have to keep working to retrieve it from that same medical "outside world".  It's hard work to get your autonomy back.  It's much easier to try to drink less and eat less salt, and then say "it's my fault" when something goes wrong.
Saying "it's my fault" saves you from dealing with what's required from you when it's actually someone elses fault and you've got to try to correct it get justice.

[Stu]

That's great for everyone. We can read in the dialysis facility reports how great everyone is doing on dialysis.  Just because we have the highest death rate in the world, just means that our patients don't care about taking care of themselves and the proper attitude is to tell them that it is their fault that they are being dialyzed so violently.  If they had kept their blood pressure under control or hadn't gotten so fat and diabetic, well, we wouldn't need dialysis at all.  Shame on all of us.  The NKF is spending so much time and energy to tell 9 out of 10 of us that we are wrong. We need to be more grateful that they are trying to save us from ourselves.

Not all of us are in the US

Our peers are saying that we should just suck it up.  If the nine people who were infected with hepatitis C in my facility had taken better care of themselves, they never would have gotten infected it had nothing to do with the technician, nurses and Davita Management.  Dialysis in America is just great. You should be happy to be alive.

Completely irrelevant to the conversation at hand

I'll leave you all with this.  If there are 10 students taking a math test, and 9 students fail, that means that there are nine stupid students, right?  It could never be a bad teacher.

I don't understand your logic here. If the patient has been told that they should limit their fluid intake and they don't, how is it the technicians fault when the patient rolls into dialysis overloaded?

[Stu]

I agree with you, Meinuk.  I saw issues with that first post as well.

I know that I'm not the most compliant patient either, but I do my best.  There are days when I know I've overdone things, and it's my fault, but there are also days when I've done everything I was supposed to and still feel like crap.  Is that my fault too?

Was it my fault when I cramped (and it was the only time I ever did) when the nurse that put me on set my goal at 3.8kgs instead of 2.8kgs and nobody caught it?

Was it my fault when my PD catheter extension came off just after the nurse had finished changing it, and instead of following procedure and starting over with a new extension tubing, she just retightened the one that came off, and I developed a peritonitis infection that nearly killed me?

I don't think so.  It's not always the patient's fault, even when they try to pin it on us

I don't think anyone is saying it's always the patient's fault, but I don't think you can argue that it's always the technicians / centre's faults either. Of course there are days when you feel like crap, even when you've done everything right, this is just part or having ESRD, I just don't think it's healthy to look for someone to blame every time something goes a little awry or you don't feel great.

Edit for clarification: I'm not suggesting that you personally look for someone to blame, Riki. It just seems to be a prevailing attitude in DX units.

[Riki]

I agree with you, Meinuk.  I saw issues with that first post as well.

I know that I'm not the most compliant patient either, but I do my best.  There are days when I know I've overdone things, and it's my fault, but there are also days when I've done everything I was supposed to and still feel like crap.  Is that my fault too?

Was it my fault when I cramped (and it was the only time I ever did) when the nurse that put me on set my goal at 3.8kgs instead of 2.8kgs and nobody caught it?

Was it my fault when my PD catheter extension came off just after the nurse had finished changing it, and instead of following procedure and starting over with a new extension tubing, she just retightened the one that came off, and I developed a peritonitis infection that nearly killed me?

I don't think so.  It's not always the patient's fault, even when they try to pin it on us

I don't think anyone is saying it's always the patient's fault, but I don't think you can argue that it's always the technicians / centre's faults either. Of course there are days when you feel like crap, even when you've done everything right, this is just part or having ESRD, I just don't think it's healthy to look for someone to blame every time something goes a little awry or you don't feel great.

The 9 times out of 10 thing IS saying that they're always trying to blame the patient.  Saying that the only reason for low blood pressure is overloading and a weak heart is simply not true.  It can also mean that too much fluid was taken off in too short a time.  It could also be that the wrong profile was used on the machine.  I also know that not every time I don't feel great it's someone else's fault.  The 2 biggest things that happened to me, that you've quoted, were not my fault, although the second one, the peritonitis, they tried to pin on me.

[MooseMom]

Most, if not all, of these side effects could be avoided if patients had access to more dialysis.  It is not the patients' fault that clinics are closed on Sundays or that more clincs don't offer true nocturnal dialysis.  And maybe if there was more support of home dialysis and more home D nurses, more patients could benefit from more dialysis and they wouldn't be bothered by these classic in-clinic D side effects.

Why can't the big corporations like DaVita and Fresenius act like the "job creators" they're supposed to be and open more clinics (creating construction jobs), order more supplies and machines (supporting manufacturing) and employ more nurses/techs/etc (creating more healthcare jobs) and let people have more dialysis?  Then you wouldn't have this argument over whose fault it is if you're fluid overloaded.

[Stu]

I don't think anyone is saying it's always the patient's fault, but I don't think you can argue that it's always the technicians / centre's faults either. Of course there are days when you feel like crap, even when you've done everything right, this is just part or having ESRD, I just don't think it's healthy to look for someone to blame every time something goes a little awry or you don't feel great.

The 9 times out of 10 thing IS saying that they're always trying to blame the patient.  Saying that the only reason for low blood pressure is overloading and a weak heart is simply not true.  It can also mean that too much fluid was taken off in too short a time.  It could also be that the wrong profile was used on the machine.  I also know that not every time I don't feel great it's someone else's fault.  The 2 biggest things that happened to me, that you've quoted, were not my fault, although the second one, the peritonitis, they tried to pin on me.

I think we can dismiss the 9 out of 10 thing, no one has given any citation for that, and it's been twisted to say that the (American) NKF has said it, if you go back and read the previous posts you'll see that no one has said that. It was originally thrown out there by Marina, citing no source. Having said that, I agree with her that the number is probably reasonably accurate.

If we go back and take a look at the original post, we see that it's probably been selectively (mis?)quoted, from the original post:

The two primary causes are gaining excess fluid weight between sessions and having a weak heart

(my bold for emphasis)

To me that says that there is room for other causes, some of which may be the patient's fault, some of which would not. Which pretty much makes this whole conversation moot! 

[fearless]

Stu,
I don't think this is about particular instances of technician's mistakes or patient's indiscretions.  It's about the brutality of dialysis as it's delivered today.  Three times a week for 3-4 hours.  It's brutal on the body.  It's damaging in the long-term.  But instead of being blunt about these facts, the publications that are meant to "educate" the patient tend to take an attitude that if the patient's body is being brutalized (pressure drops, cramping, etc.) it's because the patient isn't following orders.
The real correction needs to come to the system that's delivering patient-care, not the patient - who is only doing what a human would ordinarily do: drink when they're thirsty.