What would your reaction be to being told...

[Emerson Burick]

What would your reaction be to being told (on arrival at today's dialysis) that in future you will be weighed by a member of staff as they cannot trust us to put an accurate weight down on our forms

"Whatever you want. I don't care; more work for you guys."

...But they weren't having any of it and an argument ensued for about 20 minutes, where the staff nurse was refusing to dialyse me if I didn't agree and got really heavy
I don't think this attitude helps at all. Dialysis (as you all know) is a pain at the best of times but being treated like this... I wanted to walk out.

Of all the possible horrors and indignities of hemo you could have lost your shit over, you went for permission to weigh yourself? Interesting choice.

[Adam_W]

At my old centre, a staff member watched up weigh. At my current centre, we weigh ourselves and we get a little printout and hand it to the tech. With everyone except me they ask how much the patient wants to take off and if they feel they can handle the goal. Since I'm the only self-care patient, I just set my machine for however much I want to remove and the tech charts it.

[Sugarlump]

What would your reaction be to being told (on arrival at today's dialysis) that in future you will be weighed by a member of staff as they cannot trust us to put an accurate weight down on our forms

"Whatever you want. I don't care; more work for you guys."

...But they weren't having any of it and an argument ensued for about 20 minutes, where the staff nurse was refusing to dialyse me if I didn't agree and got really heavy
I don't think this attitude helps at all. Dialysis (as you all know) is a pain at the best of times but being treated like this... I wanted to walk out.

Of all the possible horrors and indignities of hemo you could have lost your shit over, you went for permission to weigh yourself? Interesting choice.

It's always the straw that breaks the camels back rather than the tonnes...
Little things get to me more than the major issues. Especially little things caused by attitudes. Unnecessary bureaucracy . People that don't listen to any view other than their own.

Since then they haven't weighed me and I am happy to stay in charge of my dialysis. Weight. Fluid removal. Length of dialysis. 

[Riki]

I don't like that we have to wait for one of the nurses or care workers to weigh us.  we're adults, we should be able to do it ourselves.  Besides, they're overworked enough as it is.  They don't need more work, which is basically babysitting.  They have better things to do

[kitkatz]

New center I am at now weighs me as they watch  Oh well. If they feel the need.  I figure so much more I can get bat sh*** over.

[Grumpy-1]

I'm not sure what the big deal is with them weighing you and taking your temp.  Let them earn their $...  The privacy issue is a way different issue.  I don't have any good advice for that, but do understand.   Grumpy

[Sugarlump]

I think, more than anything, it's my need to stay in control of my dialysis and treatment.
I can't be passive,
It's the only way i can deal with it. My choices not theirs. If that makes any sense

I also dislike the attitude from some nurses/doctors that once you become a patient, you are suddenly no longer seen as an intelligent adult. Someone who requires answers other than
because or my way or no way ... I question a lot of things they want to do because there are always options. An informed patient can make an informed choice.
At several points during my chequered renal history of dialysis, transplant, dialysis, transplant, more dialysis, access problems etc i have felt backed into a corner.
I have been made to feel in the wrong for refusing certain treatment and I have suffered unnecessarily with unwarranted treatment that made no difference.
I have to remind them sometimes that i am a human not a guinea pig.
And that quality of care/life is important. If their choices don't match mine, we aren't doing it. It's me that has to have live with it.

I am probably a difficult patient. I accept I am probably not easy.
But I expect to be treated as an adult and with dignity and respect.

[Riki]

I think the problem Sugarlump has, and the problem I have with the same new policy, is all the other shit that's been piled on over the years.  This is just one more thing that doesn't make any sense, or seems forced, or was dropped upon without any warning.

[Sugarlump]

There are two other things that come to mind...
climbs up on her soapbox!!!

One) I sometimes come up against the attitude that i should be grateful for my dialysis treatment, That sucks.
How can anyone be grateful for kidney failure that has blighted their entire life? That has shortened my working career,
restricted my family size, diminished my earning power and controls my weekly timetable etc but I am still supposed to be
grateful for my unit and the nurses in it. They aren't they out of love, they get paid to do a job at the end of the day.
My choice is a stark one, dialyse or die

Two) Our government is conducting a serious campaign against disabled and vunerable people, who through no fault of their
own have to claim benefit of some kind. To be seen as a scrounger, or work shy, or someone who bucks the system when you struggle
with kidney failure is the worst kind of slap in the face.
It doesn't make you feel good about yourself.

I have had kidney failure to some degree for nearly thirty years. I managed to work until 8 years ago, when dialysis and general health problems
restricted my physical abilities. My dialysis commitment 1pm-6pm on Monday Wednesday Friday, and quite often another hospital appointment plus
pre-dialysis session wobbles and post dialysis tiredness mean very small windows of opportunity ...Tuesday and Saturday mainly 

[doberose]

The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.

[cattlekid]

When I was doing in center dialysis, I didn't give a rat's behind what my weight was.  I knew my limit was 3 kilos and that was that.  I'd rather leave with an extra half kilo on than go through the side effects of taking off too much fluid.  Of course, I still urinated so there were times when I didn't even have any weight to take off. 

When a tech would balk at me not taking off all my fluid, I would tell them that they were welcome to clean up the puke that was sure to ensue if they didn't listen to me.   

[noahvale]

...........................

[Riki]

The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.

That is what we have too, but their new policy says that a nurse or rcw must the one to press that little print button.

[Sugarlump]

The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.

That is what we have too, but their new policy says that a nurse or rcw must the one to press that little print button.

Why are we NOT trusted to perform these everyday functions???

[Sugarlump]

I had a terrible dialysis session on Friday. Machine alarmed constantly and couldn't seem to suck the blood round. Eventually lines clotted and lost lines. Processed only 13 litres in 3 hours!
Had to have a TPA dwell and come back in Saturday.
Dreaded the thought of having to have another line fitted but at Main Unit, line worked fine and got a good three and a half hours with no problems. Managed 48 litres !!
Feeling bouncy now!

Dreading Monday morning, back to satellite unit that doesn't seem to be able to cope.

Had the same problem Monday, went to Main Unit Wednesday with no problems. Makes me anxious because I can't afford to have poor clearance with my high potassiums and fluid build up.
Last weeks Potassium results odd Pre dialysis 8 (after a crap session on Monday) Post dialysis 2.1.
Doc wants me to modify diet MORE and to eat Potassium binding powder with meals (Has anyone managed to eat this stuff its vile!!!)
I just want steady proper dialysis each session and no anxiety. Please.

 

[Grumpy-1]

SugarLump  You wrote "There are two other things that come to mind...
climbs up on her soapbox!!!

One) I sometimes come up against the attitude that i should be grateful for my dialysis treatment, That sucks.
How can anyone be grateful for kidney failure that has blighted their entire life? That has shortened my working career,
restricted my family size, diminished my earning power and controls my weekly timetable etc but I am still supposed to be
grateful for my unit and the nurses in it. They aren't they out of love, they get paid to do a job at the end of the day.
My choice is a stark one, dialyses or die

Two) Our government is conducting a serious campaign against disabled and venerable people, who through no fault of their
own have to claim benefit of some kind. To be seen as a scrounger, or work shy, or someone who bucks the system when you struggle
with kidney failure is the worst kind of slap in the face.
It doesn't make you feel good about yourself."

SOOOOO True.   While I have a great staff at the clinic I go to, I do understand and relate to your remarks.  I think your first comment can apply to ANYONE who has not experienced a life changing event such as kidney failure and is not personally involved in the care of another person, will have that attitude.  Until they experience it, they won't understand.   I ride a Harley Davidson motorcycle and there is a saying we have "If I have to explain, you wouldn't understand"   This can apply to us kidney failure folks too.    Grumpy

[Dman73]

I pick my battles.
Who weighs me on the scale is not an issue for me. I just make sure that they write it down correctly.

They ask me what settings I want for the machine (weight to be removed, 20 minute BP check as opposed to 30, flow, ect.) I had to get an order from my nephrologist for the reduced BP time.

The FMC center will provide curtains for privacy if needed.

I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick). I knew him for 40 years and I let it go out of respect and the thought of having to find a different unit to go to as I did once before).

When medicare took over dialysis in '73' the object was to serve as a bridge until you were transplanted and able to return to work and be a productive member of society. They provided a vocational rehabilitation counselor and psychologist to assist you with that goal.

When they started shipping patients to satellite units at the end of the 70's they figured out that there was big money in keeping you on dialysis.

Today, If you can fog a mirror they will put you on the machine and get you in the system.
I don't know of anyone receiving a transplant at my FMC unit for the 5 years that I have been there. Our medical director is not pro-transplant and in fact Fresenius supports lobbyists to vote against the life-long immunosuppressive kidney transplant act.         
 

[Chris]

The center I go to has a scale that prints out your weight in kg on a tear off ticket that is simply handed to the tech before and after D.

That is what we have too, but their new policy says that a nurse or rcw must the one to press that little print button.

I'd be like Doctor Who, "Ooooh buttons, red flashing buttons! I like buttons and I like pressing them! Let's see what this one will do!" 

[Chris]

I pick my battles.
Who weighs me on the scale is not an issue for me. I just make sure that they write it down correctly.

They ask me what settings I want for the machine (weight to be removed, 20 minute BP check as opposed to 30, flow, ect.) I had to get an order from my nephrologist for the reduced BP time.

The FMC center will provide curtains for privacy if needed.

I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick). I knew him for 40 years and I let it go out of respect and the thought of having to find a different unit to go to as I did once before).

When medicare took over dialysis in '73' the object was to serve as a bridge until you were transplanted and able to return to work and be a productive member of society. They provided a vocational rehabilitation counselor and psychologist to assist you with that goal.

When they started shipping patients to satellite units at the end of the 70's they figured out that there was big money in keeping you on dialysis.

Today, If you can fog a mirror they will put you on the machine and get you in the system.
I don't know of anyone receiving a transplant at my FMC unit for the 5 years that I have been there. Our medical director is not pro-transplant and in fact Fresenius supports lobbyists to vote against the life-long immunosuppressive kidney transplant act.       

When I was on dialysis I didn't rely on my center for any information, I went out looking at each transplant center on my own. The mistake I made mostly due to quezy feeling of seeing the lines filled with blood, was not paying attention towhat they did when they said they were doing labs. I thought they were doing the ones for my transplant center at the same time until I got a call from my center. They stopped getting blood from my dialysis center 3 months ago and no one said a word if I stopped wanting to be on the list. A meeting ensued after my tx center called and me being pist off about it. This was yet another learning curve I added to be the person I am today about my healthcare.
 
I would advise anyone to start the transplant process themselves rather than wait on someone to do it for them.Money drives the dialysis center and the tx center which can be used to ones advantage if done right to get things done.

[Grumpy-1]

Interesting comments about a dialysis clinic not pushing TX.  Both the clinic and the Neph continueally asked me if I was on a Tx list.  (at least for the first year)  Grumpy

[Sugarlump]

In England they are very pro-transplant and positively push you towards one.
The average person on the waiting list will wait 2 and a half years for their first transplant.

But sadly (two failed transplants) and a whole host of antibodies (six transfusions) that it is very very difficult for me to get any kind of a match.
My only hope is a live donor with as close a match as possible (to facilitate antibody removal prior to transplant)     

[Sugarlump]

Well, following my recent emergency admission to Addenbrookes Hospital and surgery, venograms and new fistula attempt i am feeling quite aggrieved by my treatment.

Last Friday I reached the edge of the abyss. I was ready to stop dialysis.My line wasn't working properly, I couldn't get decent dialysis, I felt ill all the time and had no quality of life. The staff kept nagging me about my potassium, and denying I had any fluid on me... I had had enough. And i broke ...
But this did make them take me seriously and with a potassium of 7.9 and creatinine of 1700, was admitted as an emergency and proper surgeons/renal access specialilists found. I was on the operating table at 7am.
My dialysis line had been put in the wrong place! Into a dead end cul-de-sac vein so all it was cleaning was a tiny teacup full of blood again and again, not touching the rest or clearing any potassium or other toxins. No wonder I felt so rough. But why why why did they not use radiography to check the position of the line when inserted.
At Addenbrookes, they have the machine in the operating room with you. This could have saved me so much grief.
I had also been told I had new usable veins left for further access attempts but a full venogram has showed, not only did I have a suitable elbow vein in my left arm, that both main veins under my clavicles are fine too for future work. And that my situation wasn't as dire as I had been told.

So I am home. New temporary tunneled femoral line whilst elbow fistula hopefully matures. Back to dialysis unit today.
And my potassium down to 3.9

I do feel my unit let me down.
I don't want to look back into the abyss again...      

[Riki]

wow.. at least I can say that my unit does good work where the dialysis is concerned, even if they have to live with stupid little rules which have no real benefit to anybody

[Emerson Burick]

I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick).

This is probably obvious, but you can adjust the temperature at which blood is returned. I suppose you could ask them to turn it up a bit.

I've discovered that I like to have it returned a lot cooler than most people (possibly because I'm on tx drugs, which have kept my temp lower for the last 9 years). If I don't adjust it down, I'm usually sweating up a storm by the time my session is over.

[Riki]

they won't change that temperature on the machine.. it's set as part of the prescription.  My unit does give out heated blankets if you're cold, though.