Coping With The Top Five Side Effects of Dialysis

[MooseMom]

Yay, fearless.  Exactly right!  The current delivery system here in the US is not the creation of dialysis patients...THAT's not our fault.

[Riki]

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.

yes, then these "tips" that are supposed to help patients cope, are so condescending, and in some places incorrect (like the no known cause for cramping) it's really not funny

[Stu]

I live in Australia, and my in centre haemo experience was pretty good. I was a pretty non-compliant patient, as I mentioned above, so I fully knew it was my fault when I felt like crap.

I don't have any experience with US style dialysis, so I can't comment on its brutality but I will say this; when the government hands over the primary care of chronically ill patients to a for profit company, the outcomes are never going to be as good as if the centres were run by a body that didn't have to worry about shareholders and profits.

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.

I'm not sure what to say to this one, I as much as anyone knows how much of a bitch that fluid restriction is (try getting through an Australian summer on one litre a day when part of the culture is to drink beer all the time). I just had to learn the lesson the hard way that dialysis is a much smoother process when you don't come in carrying 4 litres.

This is part of the reason I have chosen PD as this transplant I have fails...

[Riki]

I live in Australia, and my in centre haemo experience was pretty good. I was a pretty non-compliant patient, as I mentioned above, so I fully knew it was my fault when I felt like crap.

I don't have any experience with US style dialysis, so I can't comment on its brutality but I will say this; when the government hands over the primary care of chronically ill patients to a for profit company, the outcomes are never going to be as good as if the centres were run by a body that didn't have to worry about shareholders and profits.

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.

I'm not sure what to say to this one, I as much as anyone knows how much of a bitch that fluid restriction is (try getting through an Australian summer on one litre a day when part of the culture is to drink beer all the time). I just had to learn the lesson the hard way that dialysis is a much smoother process when you don't come in carrying 4 litres.

This is part of the reason I have chosen PD as this transplant I have fails...

PD was awesome.  It's because of PD that I was never fluid restricted.  I still am not fluid restricted, technically, but I voluntarily watch what I take in.

I've only encountered the US system when I was in the US, and I was appalled as what I learned, like Sure Seal bandages reserved for those with insurance (not like I wasn't already paying cash on the barrel head for my treatment) or nurses and techs that didn't smile, joke around, or even talk.  As much as I want to go back to the US, I don't relish the thought of going back to that unit.  It's far too bare bones for my liking, when they don't even offer you a blanket if you get cold.  They just give you a plastic sheet, which really does nothing

[Lillupie]

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.

I would say to the big name companies, I personally think they do not care about patients to be more pushing on home D. Hemo is a win, win situation all around. To them the patients are dumb and lazy (that is how I feel dialysis patients are treated), so why not put them on a machine in the center, andthey make more money by putting everyone on the hemo machine. The patients dont have to do any work themselves and Davita and other big name corporations get paid more! I see home dialysis talked about but not nearly as much as pushing for all patients to get a fistula, and that is insurance for people to go on hemo. (Im on PD and before my doctor wanted me to get a fistula. THANK GoD I did NOT listen to my doctor on getting a fistula because that would be one useless fistula!

Lisa

[Zog]

You have to remember that dialysis patients in the United States are not the customer.  Medicare and the insurance companies are the customer.  The treated patient is the product they are selling.

More frequent dialysis fixes most of the common dialysis problems.

[Riki]

Im on PD and before my doctor wanted me to get a fistula. THANK GoD I did NOT listen to my doctor on getting a fistula because that would be one useless fistula!

I had a fistula as a backup when I was on PD as a child.  It was common practice for all the kids on dialysis to get a fistula, whether they were on Hemo or not.  That fistula was never used, and was removed after I'd had my kidney for a year.

How I wish I'd had a backup fistula 3 years ago, when peritonitis made PD impossible.  It would have saved me a lot of line aggravation, and I wouldn't have had to go a year and a half without taking a shower

[rileysmom]

i definitely can relate to the itchy skin.. my skin itches so badly that i have caused my skin to bleed from scratching so much, and i definitely have the restless leg syndrome and they should add insomnia to the list. i have such bad insomnia it's terrible.